Prematurity Awareness Month Finale

Today is the last day of Prematurity Awareness Month.  Thank you all for listening, supporting and spreading this message that is so important to all of us.

The infographics in this post came from another preemie Mom who has an amazing blog that chronicles their journey, but also provides an immense amount of support and information to the Preemie community.  Many Thanks to Tatum at aintnorollercoaster.com .

I hope none of you will know another family going through the trials of a NICU journey, but with 1 in 8 babies being born prematurely the odds are that you will.  Below are some wonderful ways that you can help.  Ill add some additional ones below as well.  

We were lucky that we had many people that reached out to us in the ways that Tatum listed above.  Some additional things that we found helpful and loved were:

• Personalize: Anything personalized with Virginia's name made our home away from home for 4 months feel better.  We received blankets, preemie hats, signs, and crosses.  She was the only "Virginia" in the NICU so it meant that her things did not get misplaced as well.  We also loved personalized items because her official name in the NICU was "baby girl kent" and I liked when the doctors and nurses readily recognized and knew her real name.  A bit of a rant: I know it was simply hospital procedure (because the babies are admitted to the unit before they have a birth certificate) but I HATED that she was refered to (mostly on paperwork, during rounds, etc)  as baby girl kent.  It felt so institutional and she was a real live human and had a name afterall!

• Gift Cards for gas or parking:  We had many people who very generously gave us gift cards for gas and paid for our monthly parking at the hospital.  Many families live a significant distance from the hospital and the financial burden of the travel can be overwhelming.  We were lucky that our trip was "only" 55 miles round trip, but we often made multiple trips per day.  

• Visitors:  Not everyone feels this way but we appreciated visitors.  We obviously did not have time to cook for or entertain anyone, but we really appreciated when people would meet us out for a lunch or dinner, stop by our house with breakfast or sat with us in the waiting room in the hospital.  

Much of what was mentioned was also a huge help to us while I was on bedrest.  Ill dedicate a post next week to helpful ways to support a friend on bedrest at home or on hospital bedrest.  

Prematurity Awareness Month- Learning to Celebrate

Heath and I learned early on that celebrating the positives, the achievements, and the victories was going to be our way to cope.  As NICU parents we were celebrating many things that parents often take for granted.

We celebrated making it to 24 weeks with YNHH clam chowder

We celebrated Virginia's PDA closing by kangarooing with her for the first time

We celebrated the first day that she got to wear clothes

 We REALLY celebrated when she came off the ventilator for good.

We celebrated the day that she went into a "big girl" crib, which meant that we could pick her up and snuggle her any time we wanted.  

We celebrated when she took her first breaths completely on her own.

We celebrated the first whole bottle of milk that she took.

We celebrated the day we took her home from the hospital 

We celebrate each milestone along the way, big and small, delayed or on time.  Most parents of premature babies know the fears of potentially never seeing each of these milestones, so I think we all celebrate to honor our warriors.  All babies develop and reach milestones at different rates, but this is especially true for premature babies.  There are many preemies that will "catch up" to their actual age peers very quickly, others will take the 2 years that many physicians allocate for preemies to "catch up" and others will never "catch up."  

We have been doing ALOT of celebrating lately.  Virginia has had an absolute explosion of milestones lately and we are just so so proud of her.  

She now crawls everywhere and is climbing on everything!   She is fast too!

She is babbling all the time.  She says bye bye on occasion and has got the "no" head shake down pat :-/

She mastered the sippy cup this week and we are down to one bottle a day!  

Yes Virginia, there is a Santa Claus

Santa visited the Kent house on Sunday to meet Virginia.  She was a bit apprehensive at first but enjoyed his visit.  She told Santa that all she wants for christmas is her 2 front teeth, which we suspect are on their way in.  

Thankful

Its hard to express just how thankful we are to be home and healthy this Thanksgiving.   We are also thankful to each of you who have supported us, loved us and prayed for us.  We are so blessed.

While we have so much to be thankful for we are also thinking of the many families that are struggling this holiday season.  We are thinking of those families that are spending Thanksgiving away from their loved ones, in the hospital, and those struggling to find joy this holiday season.

We are also thankful to all the people who are away from their families because they are serving our community.  Thank you to all the doctors, nurses, firemen, police officers, soldiers, and others that serve.  We were in the hospital for many many holidays last year and while it was difficult, some of our best memories from our hospital stay were those holidays.  The doctors, nurses and staff were so warm, thoughtful and caring despite the fact that they were away from their own families.

We always were surprised with a card, sign or gift "from" Virginia on holidays.  This is the one of the  ones that Virginia's nurses helped her with last Thanksgiving.  I will be recreating this same craft with her later today.  Ill update the post with new pictures.

World Prematurity Day

Saturday was world prematurity day,  Many, many thanks to all of you who wore purple and who took the time to tell others about prematurity.  It is a very real problem worldwide and in the United States.

Worldwide Crisis:
In other parts of the world far too many babies that are born prematurely die because of the lack of adequate medical care.  Even without the most advanced medical techniques, like the ones that saved Virginia, many of these babies can be saved with simple education and care.  Many babies die of jaundice, diarrhea, dehydration and simply because they cannot maintain their temperature.  Simple medications, basic warming isolettes, phototherapy lights, and even education about kangaroo care could save many of these babies.

US Crisis:
In the last 20-30 years in the United States there has been tremendous improvement in the outcomes for premature babies, especially among the smallest and sickest babies.  With that said, the crisis of prematurity has gotten more and more troubling.  The rate of premature birth in the United States is among the highest in industrialized nations.  There are many reasons for this, but none of them should be excuses not to push for more awareness, funding and education to improve these statistics.   It is important to note that most of the time a premature birth is of no fault of the mother or family.  I still struggle with guilt, but I know that I did everything I could have done to have a healthy full term baby. I fought hard for every hour of my pregnancy and would have done ANYTHING to spare Virginia of all she went through while in the NICU and all she continues to go through.

Below is a photo of Virginia from last year on world prematurity day and then again this year.  She is pictured with the same beanie baby lamb in both photos.

crawling

About an hour after I posted yesterdays blog Virginia started crawling :) 

some big developments

Virginia has learned some big tricks this week.  She now claps on demand, when she's happy or even (as my instagram friends have seen) when she is crying, lol.  

Ginny has also been saying bye bye.  She is not consistent but it has happened at least 5 times this week so I don't think its a coincidence either.  

Lastly, She is getting very close to crawling.  She learned how to get from her belly to her knees and then get back to sitting.  She will also go from sitting to kneeling and sometimes standing.  We had some baby friends over today and she was intently watching some of them crawl.  I think she is going to figure it all out pretty soon.  

Excuse the umm, rather unflattering view in the video below ;)

Prematurity Awareness Month- Our journey in medical words

I didn't often talk about the specifics of Virginia's medical conditions.  I tried to simply ask for prayers and healing without dwelling on the negative or exhausting myself or Heath by going into details that were either cumbersome to explain or painful to recount. It was also a way of protecting ourselves and trying to stay positive.  By focusing on the positive (and admittedly sometimes ignoring the negatives) we were able to keep going; it just worked for us.

As part of my efforts with the prematurity awareness month and my work with the march of dimes, I have promised myself to be a little more "real."  Most people don't understand the words below and thats not the point, it is simply a snapshot of our lives. I doubt many can understand what happens within a NICU unit unless you have have lived it and and the same goes for behind the door of a home with a preemie or medically fragile child.  My hope and the hope of many others is that with more awareness, more advocacy, and more funding less and less people have to know the preemie reality and more importantly the reality and indescribable grief of losing a child to prematurity.

This is what we encountered as part of Virginia's "typical" course.  Yes, this is all fairly typical for a 25 weeker.

NICU Diagnoses (that I can remember)
Very low birthweight (650 grams)
Respiratory Distress Syndrome
Hypotension
Hyperbilirubinia
Patent Ductus Arteriosus (PDA)
Bronchopulmonary Dysplasia (BPD)
Chronic Lung Disease (CLD)
Pulmonary Hypertension
Pulmonary Fistula
Pnemothorax
Apnea of Prematurity
Bradycardia
Anemia of Prematurity
Retinopathy of Prematurity (ROP)
Nephrocalcinosis
Hydronephrosis

Procedures in the NICU (Thankfully no Surgeries!):
Intubation
Reintubation x 2
Ubilical Lines
PICC line
PICC line revision
more chest  xrays than I care to know about.
more blood tests than I care to ever think about.
at least 10 blood or platelet transfusions.
at least 15 ultrasounds (5 x head, 6 x cardio, 3 x kidneys, 1x diaphragm)
1 MRI
Swallow study
Endotrachial study
Endocrine study
IV's in every limb and so many heel sticks that her heels have a fine pattern of tiny scars.

Home life, while less complex and scary still does not fall into the typical category that most people think of.  Yes, it is our typical and we are making it work and are quite happy, but it is still full of plenty medical terminology and a life that is not laid out in any of the "what to expect" books.  

Prematurity Awareness Month- March of Dimes

Virginia on November 13th last year

One of the first places we turned to when it became apparent that Virginia would be born early was the March of Dimes.  The great part of being at a large university hospital for bedrest and our NICU journey was our access to top notch medical care, the downside was at times we felt a little lost in the maze.  The March of Dimes filled the gaps through their NICU support program, their online resources, and the wonderful people at the CT March of Dimes who helped me navigate the preemie world outside of the hospital.

The march of dimes is not just about family support.   They are a major source of research funding,  educational programs, advocacy initiatives and community grants.  Today they released the national prematurity report card which is a benchmark of their initiatives to reduce the rate of prematurity in the US.  This report highlights the major problem of prematurity that we have in this country.  On Saturday the March of Dimes joins forces with many other organizations through advocacy and awareness on World Prematurity Day.  Please join this cause and our family by wearing purple this Saturday. 

Lastly, I had a kick off meeting for the March for Babies walk today.  We plan to be involved in the planning this year for our walk here in Fairfield and have set some goals for our family team.  Last year we raised $5,700 and had 10 walkers.  For the 2013 team we hope to raise over $7,500 and have at least 25 walkers as part of team Go Ginny Go.  Please save the date for April 28th, 2013 and join us as we celebrate our journey, the journey of our friends and celebrate all the babies and angels that are born to soon.

Insanity

Insanity: doing the same thing over and over again and expecting different results.  - Albert Einstein

It's not Virginia's fault that I have experienced motherhood induced insanity, its clearly my own.  You see, 12.5 months later I still have not learned that Virginia will do things when she is ready, not when I am ready for her to do them.  Let's take pacifiers, bottles and sippy cups for example:

From the middle of December to the middle of January she had a minimum of 3 different binkys in her crib that we would try to get her to suck on.  She hated them all.  

 From the middle of January until the end of February we must have tried to give Virginia 8 or 9 different bottles.  She hated them all.

And here is her current collection of sippy and straw cups.  She thinks they are all fun toys and is learning all about how gravity works by dropping them from her high chair over and over and over again.  

If I don't learn my lesson soon and realize that Virginia will do things when she wants to do them I will eventually end up with every type of toddler fork, every type  tricycle, and every type of pencil that I can find.  

baby, its cold outside

Baby, its cold outside.  A week after Virginia's first hurricane (on the outside at least, she was in my belly for Irene last year) she is watching her first snowflakes at home.  It snowed a few times while she was in the hospital but it was unseasonably warm when we brought her home in late February and before we knew it Spring was upon us.  Virginia isn't bothered by the cold but finds getting bundled up just as frustrating as we find getting her bundled up.  

The cold and snowy weather is a reminder that cold and flu season is upon us.  We have definitely been staying home more and doing a whole lot of handwashing, but we are still awaiting an appeal for synagis.  Synagis is the vaccine that protects premature babies and babies with certain heart and lung problems from the RSV virus.  Unfortunately Virginia falls 9 days short of the automatic cutoff for the vaccine.  The cutoff for babies born prior to 28 weeks gestation is that they be under 1 year old by the start of RSV season, which is November 1st.    The frustrating part is that had she been born 9 days later , she would have theoretically been a healthier 26.5 weeker and would qualify automatically for the vaccine. We are in the middle of the very frustrating appeal process, and while our insurance company has been amazing this past year we are seeing the uglier side of the process and bureaucracy.  The synagis vaccine is quite expensive, about $1800 per injection making it about a $9000 expense for the season.  What is beyond my comprehension is how an insurance company who paid out around 2 million dollars related to Virginia's prematurity would gamble on a $9000 expense.  That $9000 would pale in comparison to the costs of one readmission to the hospital because of RSV.  Unfortunately insurance is a numbers game and we will have to see if our company is going to take that risk.  Whether she gets the vaccine or not we will be doing our best to limit her exposure to germs and be vigilant about any illnesses that she does get.  

Since it is Prematurity Awareness Month, I think it is a good opportunity to point out just how many obscure  impacts prematurity has on an entire family.  The health and safety of a premature baby is the number one focus of any family, but there are so many extra challenges, burdens, and stresses that overwhelm the families that are impacted by prematurity.  Some of the more random and non medical affects of prematurity on our family:

Our weekly schedule almost always includes at least one appointment for occupational therapy, physical therapy or  a specialist appointment; these appointments are nearly impossible to schedule outside of the 9-5 workday.

We had no option but to hire a Nanny to come our home because we could not send Virginia to daycare.

 I exhausted all of my maternity leave 8 weeks before Virginia even came home from the hospital.

We put almost 10,000 miles on our cars in the 4 months that Virginia was in the hospital.  

Our once healthy lifestyle (eating well and exercising) has suffered along the way.  Something we need to work on.

Our most important purchase for the nursery was an air purifier.

We met our 2012 medical insurance deductible and co-insurance maximum by January 3rd. 

This girl makes us smile all day long...

November is Prematurity Awareness Month

It seems like everything has a month doesn't it?  Well this month is an important one to us.  November is prematurity awareness month and November 17th is world prematurity day.

One evolving goal of this blog and telling our story is to inform others,  give hope to others, and learn from others.  This month we will spend some time doing all of those things.

1 in 8 babies in the United States is born prematurely (prior to 37 weeks gestation).  Prematurity obviously presents greater risks the earlier the baby is born and the smaller the baby, however any baby born before 37 weeks is at much greater risk for complications than a baby born full term.  The most important way of avoiding a premature birth is knowing the risk factors and signs of premature labor.

I believe that alot of good OB care, a whole lot of luck and prayers, and some momma intuition saved Virginia from being born even earlier than 25 weeks.  Not only did a month of bedrest buy us the most critical weeks, but it meant that we were as prepared as we could be for Virginia's early birth, both medically and emotionally.  I received steroids, magnesium, and antibiotics; all which were critical to Virginia's optimal outcome.  

We never expected Virginia to be born early, but I knew the risk factors that I had (a previous uterine surgery),  I knew the signs of premature labor (I really had none, but had some Braxton Hick contractions earlier than "normal"),  and didn't hesitate to seek help from my OB team when I thought things were a little "off".    Virginia's birth story explains how it all happened, but in short knowing the risk factors, knowing the signs, and following my gut was critical to our story.

If you are pregnant please learn the risk factors.  Listen to your body closely and do not hesitate to seek your Doctor's help if you are concerned about anything.


Risk Factors for Premature Birth:

Women are at greatest risk for premature labor if:
They are pregnant with multiples
They have had a previous premature birth
They have certain uterine or cervical abnormalities


Medical risk factors include:
Recurring bladder and/or kidney infections
Urinary tract infections, vaginal infections, and sexually transmitted infections
Infection with fever greater than 101 degrees F during pregnancy
Unexplained vaginal bleeding after 20 weeks of pregnancy
Chronic illness such as high blood pressure, kidney disease or diabetes
Multiple first trimester abortions or one or more second trimester abortions
Underweight or overweight before pregnancy
Clotting disorder (thrombophilia)
Being pregnant with a single fetus after in vitro fertilization (IVF)
Short time between pregnancies (less than 6-9 months between birth and beginning of the next pregnancy)


Lifestyle risks for premature labor include:
Little or no prenatal care
Smoking
Drinking alcohol
Using illegal drugs
Domestic violence, including physical, sexual or emotional abuse
Lack of social support
High levels of stress
Low income
Long working hours with long periods of standing

Signs of Premature Labor:

Contractions (your belly tightens like a fist) every 10 minutes or more often
Change in vaginal discharge
Pelvic pressure—the feeling that your baby is pushing down
Low, dull backache
Menstrual like cramps

teeth

Virginia finally has two little pearly white teeth!  

Hurricane Sandy

We were so very lucky to be spared during Hurricane Sandy.  We live about a mile from the Long Island sound and only a few hundred feet from a major waterway that leads to the sound.  We were not in the evacuation zone but were in the stranded zone and were told to expect to potentially not leave the area for several days and be without power for as long as 7-10 days.  We did lose power but otherwise had no damage.  After 4 days without power and heat the house started to get too cold for Virginia.  We decided to go to Nino and Papa's house for heat, lights, and love.  We are finally able to watch the TV coverage and realize the vast devastation in the tri-state area and realize just how lucky we are.

In photos here is how we spent the week:

V played with new toys on Sunday as we waited for the storm to come.

We ate dinner by candlelight on Monday night.

Ginny learned all about shadow puppets on Tuesday night.

We went to a halloween party on Wednesday at a friend's house where there was power.

We bundled up on Thursday as the house started to get cold.

We are here!

The lack of posts from the past week is because of Hurricane Sandy.  First because we were preparing for her and then because we have been without power and heat since Monday afternoon.  We are ok, our house is ok, and our town is starting to get up and running.  Our heart breaks for all of the devastation.  We are especially thinking of our neighbors who have been flooded, our family in Long Island who have lost so much, and all of the ICU, PICU, and NICU patients who had to be evactuated from NYU during the worst of conditions.

We will update more with lots of photos and happenings once we either get power or retreat somewhere else with power.

ok ok  one photo from Halloween!