World Prematurity Awareness Day

When you are a NICU parent, soon-to-be, current or former, you pay attention to the weird holidays, like World Prematurity Awareness Day, because to you, these are not weird at all.  These are days we get to celebrate the challenges we have been through in our lives.  These are days we get to take a few extra minutes and remember. 

We remember where we were when we first learned we were pregnant. We remember the day like it was yesterday because for many of us this was something that we had worked for and waited for and was finally given to us in a glowing moment of joy.

That glowing moment was followed up by an amazing ultrasound to confirm the pregnancy. We all remember waiting in anticipation to hear the one thing we pray for in the first trimester.... the heartbeat. We all remember welling up with pride and joy because we had hit the first milestone of a pregnancy. We had brought a viable life form forward.

Then we all remember the day that our world came crashing down!

For some, this day came with progressive testing, ultrasounds, doctors visits and long hours waiting. For others, like myself, this day was sudden and unexpected. It was thrust upon us like a cruel joke that someone refused to take back. Many call this deliver day, some call it the day their bodies failed them.

I don't see it either way. I see it as the day medicine really proved itself. I see it as the day my family grew by hundreds and thousands, not only by one. Because on my delivery days, I joined the ranks of NICU mom. I learned what it was like to be a nurse, a caregiver and a mother. I learned how to lean on other parents for support. Parents who were experiencing the same feelings and waiting for the same milestones as me. Parents who used terms like inchstones, intubation, ventilator, kangaroo care, transfusions.... parents who measured successes by ounces gained and mm grown. These parents become your family. In addition, you soon learn to love the other NICU moms you were blessed with when your world supposedly came crashing down. We find solace in the nurses who helped us every day to keep these tiny figures alive. They cheered with us, cried with us, and slapped us upside the head when we needed it. And we trusted them because they had been there before and they would be there again! 

So on this amazing holiday that not many recognize but all of my fellow NICU parents share, be proud of your experiences. They have made us who we are! They have brought us together. They have bonded us like no other experience can.

Being a NICU mom is something I am proud of. I am proud that medicine is so advanced that even when my body fails me, medicine did not. And because of that I have two healthy thriving beautiful girls!

 

Fatten them babies up!

We were recently told this by yet another medical professional.  Yup, I am to fatten my babies up.  LOL. 

Thanks to creative eating habits of my children and their medically proven, incredibly high metabolisms, they do not gain weight like normal children.  We have to almost double their caloric intake every day just to keep them healthy and growing.

 Here comes the problems.  When your children are picky eaters, how do you do this??  Their pediatrician and I do not understand why they suddenly stop eating certain foods or refuse food all together, but I need to figure something out.  So we have put a plan in place and are going to try a few things.  Hopefully this will have my midgies growing correctly again. 

Between weight checks the last three weeks, Annaliece lost 9.8 BMI and Elizabeth lost 8.7 BMI without much height growth.  Elizabeth is luckily still measuring on the charts, but we can't even get Annie to MAKE a chart!  LOL.  Poor thing is so tiny!  So, if you know any good strategies, recipes, ideas, or options, give me a call. 

We REFUSE to medically mess with their metabolisms, so please don't suggest I try the protein complex that PCMC happily doses to preemies in our position.  There has not been enough long term research for me to agree to something like that.  I would rather small children than 16 year old girls with weight problems because their metabolism doesn't work right.  But anything else I am open to....  Ready, GO!!

The IceCream Place

Over the summer, Megan introduced my children to the "Icecream Place."  Now they want to go either there or the "Buffet Place" every time we eat out with Auntie Meg.  The ice cream place, more professionally known as Leatherby's Family Creamery, is famous for their monster size servings and their homemade caramel and hot peanut butter.  It is amazing!!  The girls love going there with Auntie Meg. 

State Fair with the Animals

Mom and I took the girls to the Utah State Fair in September to see the animals.  It was a super fun evening.  The girls had an amazing time and they both ran Grandma ragged!  LOL.  I love these girls and their love of the outdoors. 

 

At the Fair, they had this children's section that they could go through.  They carried buckets, wore aprons and did all these different farm things in order to purchase a prize at the end.  So the girls milked a cow (And collected a carton of milk for their basket), sheered a sheep (and collected wool for their basket), gathered eggs (And collected an egg for their basket), harvested an orchard (and put an apple in their basket), planted seeds in the garden (and collected a vegetable), fueled their tractors and plowed the field.  Then they "sold" what they collected at the store and received $1 with which they got to buy a treat from the snack shack!  It was pretty cool.  The treats were nice too!  The girls had an awesome time. 

Then Grandma took Elizabeth on a pony ride.  Annie is still a bit small but maybe next year.  All in all it was a great trip!

Annaliece's Second Birthday

 

We celebrated Annie’s party a little late this year due to so much going on in our world!  However, it didn’t matter when we did it.  She was still the happiest little girl.  She loved the cupcakes and especially loved the Minnie Mouse theme.  Friends and Family showed up to celebrate with us and it was a really nice low key event!

 

 

 

 

Early Intervention

Early Intervention is an educational program ran through the Jordan School District that is geared toward children with developmental disabilities.  Teachers and therapists of all styles work with children on a variety of developmental delays to try and get them back on track before they reach school age so that we can hopefully prevent them from needing remedial programs once they reach mainstream schooling.  Most of the time this program completely works and a child is totally on track by the time they reach first grade.  Is some cases, the child still needs minor assistance when they reach school , but in ALL cases, at least teachers know exactly where the child is and what is needed when they get to school and their educations can be built to their needs so if they need to be sent to a specialty school or program we can do that from day one.  

The program is designed to teach siblings and parents how to cater a child’s play and home environment around key theories so that a child can maximize their learning.  In Annaliece’s case, she is incredibly behind in her social and emotional oral communication and development.  So after meeting with her therapist, whom Elizabeth fondly calls Dr Sue, we have set the following goals for the next six months:

• Use 20-25 words or signs to describe her personal day to day needs.
• Use a fork and spoon to be able to cleanly self feed all meals.
• Be able to accurately play with 10 daily objects in an appropriate manner. (example: feed a baby, bounce a ball, build with blocks, etc)
• Express appropriate emotions at appropriate times, especially when interacting with other children.

So once a week for the next several months Miss Sue will be coming to spend time at our house and work with Annie.  She will be teaching Elizabeth, Jason and I how to use our daily tasks to incorporate additional skills so that we can encourage steps toward these goals.  Here’s hoping that is works.  I have total faith that is will, but if it doesn’t, we set another few goals and we keep going.  

The other good news is, this program also has music classes and other great things that we can participate in together while we are doing these therapies.  So I get to start taking the girls to play groups and music classes starting next week.  I am super excited for that.  They will have so much fun and they will never know that it is educational therapy.  Elizabeth is excited that she gets to participate as well. 

Annaliece's First Birthday

We held Annaliece’s first birthday on a sunny Sunday afternoon.  We had a nice little turnout of family and friends.  Elizabeth was more interested in helping us open Annie’s gifts than Annie was, but hey, what are big sister’s for.  We did a ladybug theme to mark the big occasion for our little lady and I handmade the invitations and most of the decorations.  Grandma Bartlett made the cupcakes and ordered the cake for Annie as part of her gift and we tried to keep expenses to a minimum.  

We have a lot to celebrate in this past year.  While Annaliece continues to be small in stature, she has proven that size isn’t everything.  She has hit most of her milestones on target and continues to strive to reach the rest.  She is a bit speech delayed and struggles to push the walking barriers but works at it all the time.  She isn’t gaining weight very fast although it isn’t because she doesn’t like to eat.  LOL.  That little one can pack away food better than most. 

She was very happy at her one year party and loved all the beautiful gifts she got.  We did miss the presence of some of our family but loved having those that joined us.  Annaliece especially loved having her own smash cake and LOVED the frosting!  She was disappointed when daddy finally took it away.  She loved having her former NICU buddy Max there to play with and it was an extra joyous party when Kiri  and cousin Braylee came to join them.  Having all those babies in one house playing was fun to listen to.  They have their own way of doing things that makes the rest of us wonder what they are up to.  

All in all it was a wonderful event and was just perfect to mark the one year survival of our very precious princess.  Here’s hoping that the next year is a bit calmer in comparison!

Update on Annie -- 9 Months

Annie recently turned 9 months old. What a milestone for us! I remember seeing her for the first time in the NICU and wondering how on earth something that tiny could possibly survive, yet here we are.

We had her 9 month check-up last week and things went so much better than I could have ever imagined.  It has been such a long 9 months and yet things are looking so bright and she is making such great progress. 

STATS:  weight – 12 lbs 15 oz           length – 24.5 inches     

She is eating 4 solid foods a day and drinking 30-40 oz a day.  She takes 2-3 naps a day and wakes only once at night to eat, but at 12 lbs, can you blame her?! (We would love to be sleeping through the night, but we figure that will come when she weighs a bit more!)  She crawls and rolls all the way over.  She has also begun pulling herself up on things and she has begun cruising along things.  She pulls herself to a sitting position and she loves to interact with other people.  She is a very social person.  She can say Mama, Dada and Hey.  She loves to play with Elizabeth and she can grasp toys and knows how to push and pull them.

On the flip side, we can’t understand why she is still so tiny.  I wish she were a little bigger.  Her doctor wishes she were a little bigger.  When we spend time with other NICU moms I see their babies and they appear normal sized and then I see Annie and she so teeny tiny!  I am reassured by her health and developmental progress, but there is something to be said by my daughter barely graduating to 3 month clothing on her 9 month birthday! 

But hey, let’s look on the plus side, she is happy and healthy, and I pat Jason and me on the back for it!  We are good parents and because of that we have a micro-preemie who has made it and who is thriving!  Happy 9 months baby girl!  Your parents love you!!