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.