Wednesday, December 26, 2012

Merry Christmas and Happy New Year

Merry Christmas and Happy New Year!!

Thank you for continuing to follow Britian and Jillian's story. They are true miracles and we are blessed each and everyday to have them in our lives. We pray that 2013 is a blessed journey for you and your family.

Sunday, December 16, 2012

Praise Report

Lots of big milestones in our house these past couple of weeks, so much to give praise for.

Britian is walking full time, no crawling from her whatsoever. Seems like just as I posted the last update she set out to prove me wrong and stopped crawling.

Jillian is climbing on anything and everything that she can. Her latest is on top of the foot stool to our glider. Not only is the foot stool 18" or so off of the ground, but it moves. She has mastered climbing on top of it and happily sits there rocking herself and having a the greatest time of her life. She also now uses a walker around the house to encourage her walking. What a blessing it is to see her up and walking and also with the motivation to walk. Not long ago, just earlier this year, she wasn't crawling nor did she have the self motivation to go anywhere on her own. I know my baby girl will be up and walking without the walker very soon, she is so determined and loves to be up with Britian racing around the house.

Liam is also mobile. He started crawling finally this week. His first destination was the pantry of course because that boy loves to eat. So now everyone in our family is up and moving.

How long before I have to chase them in 3 different directions? :)

Saturday, December 8, 2012

Major Milestones for the Girls

Britian (left) and Jillian (right), 22 months
Britian and Jillian have been accomplished some major developmental milestones lately. As you can see from the picture, they are growing wonderfully and before we know it will be celebrating their 2nd birthday.

Britian is now walking nearly full-time. She will crawl to be silly or if she thinks she can get somewhere faster. I still catch myself doing a double take when she comes walking into a room, watching her walk makes my heart swell with excitement. She has come so incredibly far from that little girl in the NICU isolette. Not only is she walking but she has also become our little daredevil. And dare I say she is the most adventurous of our children thus far. She climbs into and onto anything and everything she can get ahold of. Tonight she discovered that she can get onto our dining room chairs which means nothing on the kitchen table is safe nor is my computer desk which has one of our dining rooms chairs for it's seat. We will all have to be more diligent about putting stuff away so her little fingers stay safe.

Jillian is also making great strides. Everyday she is getting stronger and more stable in her standing. Her Daddy has really been working with her on standing independently and her progress has been tremendous. She also now can stand up on her own in the middle of a room without assistance. This week she has also started pushing around a walk behind push toy. Also earlier this week she took her first 4 cruising steps along our coffee table. Not only did she take 4 steps on her own to get a toy she took these steps to her weaker side. After physical therapy this past week we now have a walker to use here at home. Brit had the same one to help her transition into an independant walker and we are hoping it will work the same for Jillian. She is so motivated to walk and is so happy when she is up and walking, I am hopeful that in very little time we will have 2 new walkers in the house.

Thank you again to all of you who continue to follow our journey and lift us up in prayer. We've come so far in the past 2 years, seems like just yesterday sometimes.

Tuesday, November 13, 2012

Grieving for a Special Needs Child

There are times in our lives when we ask ourselves "how did I get here?" or wonder "I never thought I would be in this situation."

If you have a child that others describe as having "special needs" you know exactly what I am referring to. I can almost guarantee that like myself, you never imagined yourself the parent of a "special needs" child. I know I certainly never did, not in a million years. Having a child with uniquely beautiful blessings was one of those things I always thought happened to other people.

But here I am, immensely blessed with my amazing little Jillian.

Realizing, accepting, and embracing your special child is a process though. Most of us don't come by it naturally and must go through an emotional roller coaster much like the process of grieving. I must admit that I suspect I am early in my grieving process. During the day I happily embrace Jillian for all that she offers our family. But at night when I am alone, sometimes I cry. I cry because it is overwhelming, I cry for my worries, I cry for a whole host of other reasons. I need that release, that emotional opening of the pent up worries from the day. I know there will be more crying, more worrying, and more questions as we walk down this road with our beautiful Jillian. After all, we don't even have a diagnosis yet.

January 29th is the day. I know I will be a mess. . .I'll keep it together during the marathon appointment but eventually I will have to cave and cry and cry and cry some more. Then I will be ready to continue advocating for Jillian like I have from the very beginning.

Jillian is a huge blessing and an overwhelming joy to our family. We wouldn't be complete without her. But until you are the parent of a beautifully blessed child you won't fully grasp what that means. Just like you don't know unconditional love until you are a parent. Likewise, you don't know how joyful a child with unique needs is until they are your own flesh and blood. From the outside these children may look like a stress and a burden. But please, I implore you, do not ever think that when you see a unique needs child. They are a joy! A pure, innocent, beautiful blessing to their family and everyone that comes to love them.

Monday, November 5, 2012

Happy Halloween

Ever wonder how hard it is to get 6 kids to all smile and look at the camera for a simple photo? 15 attempts at a picture before trick-or-treating and this is the best one. It is all about the memories right? :)

We were blessed to be able to spend Halloween in San Diego this year. It has been over 2 years since were "home". It was a fast 10 days but we had so much fun and had amazing weather.

Our 6 beautiful blessings: L-R Irelynn as Ariel, Jillian the Ladybug,
Alex the pirate, Britian the ladybug, Tyler the pirate and Liam the Iowa Hawkeye football player. 
I didn't get a good one of the girls by themselves but here is my little hambone grinning for the camera.

This was the first year that the twins got to go out trick-or-treating. While they didn't go door to door they did ride along while we took the older 3 out. It was a ton of fun and they enjoyed watching all of the activity.

Monday, October 22, 2012

October 2012 Update

Look at how my 3 preemies have grown!! What a blessing they are.

Britian and Jillian are now 20 months old and Liam is 8 months.

The girls had an appointment last week with high risk infant follow-up in Iowa City. They were each assessed on their adjusted age of 16 months.

The results were much like I expected. Both girls continue to grow wonderfully and stayed the same on their growth charts or bumped up a bit. Our next appointment with infant high risk will be to assess Britian at the magical "all caught up" 2 year birthday mark. The girls were due mid-May so our appointment will be late April or May sometime. Jillian's delays are too much for her to continue with high risk so she has been referred to a specialist to assess her situation. I have a sense of ease with her upcoming assessment though because I know her and see all of the progress she is making.

7 months ago my little Jillian couldn't even get up on her hands and knees in a crawling position. Today with the help of our wonderful physical therapist she is not only crawling but she crawls over objects, onto boxes, pulls up on anything and everything including flat walls (huge milestone) but today she also took 3 steps toward me cruising on the couch. Praise the Lord!!!

I know in my heart that even if Jillian has lifelong delays they won't hinder her living a full and active life. Will she be diagnosed with cerebral palsy? I'm not sure. But if she does have CP then her case will most likely be a very mild one. She is a blessing and a joy to our family each and every day regardless of what doctors think or what is written in her medical charts.

Britian: 32", 22#6oz
Jillian: 31.5", 20#14oz

And even though this blog is about the girls, I should add that Liam is 21 pounds. Yes, their little brother who entered this world at 6lbs is now heavier than Jillian and quickly catching up to Britian.

Sunday, September 9, 2012

18mo update!!

Has it really been 6 months since I last posted? Wow! Not surprising though, I hardly have a minute to myself these days let alone enough time to gather my thoughts and post a coherent blog entry.

It has been a busy 6 months! Some of the highlights include:

  • Jillian is now crawling
  • Britian is so very close to walking
  • Both girls are feeding themselves everything 
  • Britian has orthotics on both feet to help correct pronating and other feet position issues when standing. Jillian will have her own set of orthotics before too long to help with standing stability.
  • Jillian's nervous system continues to improve and she is far less shaky then she was earlier this year.
  • Both girls are finding their voice and what beautiful voices they are! Britian has a few basic words but like most toddlers communicates is many other ways as she learns the words to say what she wants. Jillian says "Momma" but mostly still babbles. She has new sounds that she is practicing though so like most other things, she will just be slower to reach this milestone. The fact that she continues to progress is all that I can ask for.
And most importantly. . .
  • Jillian is off of oxygen!!
Yep my little peanut is finally off of oxygen. At our appointment back in June she was finally given the green light to come off of oxygen and she hasn't looked back since. Thankfully she didn't need to go back on it like Britian did when she first came off. Jillian came off of her oxygen just in time because soon after her graduation she started crawling.

At their 18mo appointments, Britian weighed 21lbs and Jillian was 20lbs. They've both come a long way from their birth weight of 1lb 6oz!!

Jillian the day she came off of oxygen!!

Sunday, March 11, 2012

1 year update

Amazing to think that a whole year has gone by and my babies celebrated their 1st birthday already. I know I've been horrible about posting updates and new pictures, the last picture in this post will give you a glimpse of why I've been so busy. :)

At their 1 year appointment Britian was 19 pounds and Jillian was 16lbs 14oz. Jiilian is growing like a weed and quickly catching up to her big sister. It is becoming harder and harder for non-family members to tell the girls apart. We will be starting physical therapy with both girls in the next couple of weeks. It is our hope that they will catch up in their gross motor skills.

Happy Valentine's Day 2/14/12

Yummy mashed potatoes!

Mashed potatoes taste even better with my hand in my mouth!

Britian contemplating the potatoes

Time for a big girl carseat

Hmmm, let me see if I can get this foot up there

Jillian tube free for the moment

Tummy time times 2 3/11/12

Happy 1st Birthday!!

Happy 1st Birthday Britian and Jillian!!!

So hard to believe that it has been a year since our miracle daughters Britian and Jillian were born! We chose to not do a party this year (despite what my heart wanted) because on the day of their birthday I was discharged from the hospital after having their baby brother Garrett Liam. I know we will throw the girls a big party next year to celebrate and they will be that much older and enjoy the party that much more. The cake this year was made with lots of love by their older brother.

Friday, January 27, 2012

Reflections From the Other Side

Until you are a NICU parent facing a long NICU journey for yourself and your baby the full impact of "being on the other side" will mean nothing. The term "the other side" for a long-term NICU parents basically means the time when you get to take your precious blessing home and enjoy them in the comfort of your home. No more tubes, no more wires, no more beeps or alarms, and definitely no more doctors or nurses telling you what you can and can't do with your baby; that is "the other side". NICU parents dream of that day sometimes to the point of utter heartache and crying. The yearning in my soul that I felt to take my girls home and "be their Mother" ran so deep in my veins that I sometimes thought the day would never come.

Britian feeding herself, one of those moments I don't take for granted!

But what do long-term NICU parents do when they are finally on "the other side"?

I can only speak from my personal experience but I know the other side doesn't look like I had envisioned. I think that is a common feeling for many micro preemie parents who are facing medical and developmental challenges with their former preemie. Of course I enjoy every second we are home with the girls, in the comfort of our daily routine and familiar surroundings. However, the list of medical appointments, daily worries about their health and development, and constantly asking myself if they are growing adequately can be overwhelming at times.

Still though I find myself filled with a greater appreciation for the little things in life because of my girls. Every snuggle, each joy filled smile, and even the tiniest developmental achievement has me jumping for joy. How else can I explain the joy and excitement I feel when I see my little Jillian sitting on her own after worrying about her core muscle development for months? Sitting is something so basic that other parents typically take for granted. When you are a parent of a micro preemie though or any other child with potential developmental delays nothing is taken for granted. Additionally, when you have faced the very real possibility that your baby, or in my case both babies, might pass away there is nothing in life that is too small or too big that doesn't full your heart with sheer joy.

Jillian enjoying a banana baby cookie, a milestone I don't take for granted!

"The other side" seemed so far away in the early months of last year. I am glad we are experiencing the other side but not a day goes by that I don't pray for those families that are currently in the NICU. The weeks are so long and the days are so short when you are confined within the walls of the NICU. Graduating and taking your precious blessing home seems like years away, an unattainable milestone. It does and will happen though and when you walk out of those doors with your baby in your arms it will feel surreal.

Enjoy all of those precious moments with your babies, premature or not, they are all blessings!

Sunday, January 15, 2012

The Birth Story

Why did it take me nearly a year to realize that I never posted the girls' birth story? I know why it never got written but geez, why did it take me so long to notice that I jumped straight from complaining that I was in pain and huge to 3 days later in the NICU? Many of you already know the details of their birth story but if you are new to this blog and our story I feel led to put the details of that night in writing. If you are expecting twins please don't let my story scare you, just remember that my story will not be yours and God has a perfect plan for you and your precious blessings. No matter how they enter this world, be it early or nice and late with a beautiful routine birth, His plan is perfect.

So without further a due, here is the story of how my beautiful girls entered this world.

February 9th, 2011 was a Wednesday. It was bitterly cold outside and snow was piled up on the ground. Wednesday's were my day to head into town to do grocery shopping and run errands. So early in the morning I got myself and my 3 kids ready for the day and we headed out for what typically turns into an all day adventure. Taking care of 3 kids and lugging my painfully heavy body around took a lot of mental and physical stamina. On this day we were in town for about 8 hours or so. I know for certain we returned home shortly before 4pm. Upon arriving home I realized that I hadn't felt either baby move all day and couldn't remember feeling them move the day before either. Granted I was fighting a head cold and had laid on the couch all day Tuesday so my inactivity could have explained their lack of movement as well. But Wednesday was full of motion and activity so I was hoping that all the commotion of the day distracted me from noticing the babies move.

I laid down to rest and count belly kicks at exactly 4pm, looking at the clock is something I will never forget because that moment was just the beginning of a very long and emotional roller coaster. By 4:10p I hadn't felt any movements at all and just knew in my heart that something was wrong. I laid in bed for a little while longer and drank some water hoping that I'd feel something, anything. But still nothing. In the weeks prior I had moments when I wondered if I should call my OBs office for one concern or another but I always hesitated and my concerns turned out to be unfounded when this pain or that contraction stopped and everything returned to normal. This day and this concern was different. At 5:01 I dialed my Obs office without hesitation. In hindsight I now know it was my Father directing my actions and taking away my doubt and hesitation. I was transferred to the on call OB because the main office was now closed for the day. They wanted me to come into be monitored. As the OB who delivered the girls later told me, "I thought you'd be here for 45 minutes, we'd see that everything was ok, and you'd be on your way home." Yep, I thought the same thing too. By 5:30 my kids were at a neighbors house and my husband who was now home from work and I were making the 30 minute drive to the hospital. The car ride was fairly quiet, I don't think either one of us wanted to put words to any concerns or speculations. By 6pm I was checked in at the hospital and was being wheeled upstairs to be monitored. The details of the next 2.5 hours are blurry. There was a lot of monitoring including fetal heart tones (my night nurse say by my bedside the entire time holding the monitors because we kept losing one baby or another on the monitor), two different ultrasound machines (one basic and another more detailed), blood draws, and a lot of wondering. No one could tell for sure if one baby had more fluid than the other or if it was just the way they were positioned, no one could tell for certain why baby "b"'s heartrate wasn't fluctuating, and no one could tell for certain what the babies measured. I remember thinking and feeling like everything was up in the air and no one could answer my questions with any degree of certainty. The idea of delivery still hadn't even crossed my mind though. I now know that the doctors and nurses were keeping the full scope of their concerns from me so as to not worry me more than necessary.

By 8:30p however, the on call OB came in my room after having stepped out for a while (which I now know was because she was assembling the massive team of personnel that would later deliver and save my girls' little lives), she put her right hand on my left knee, stood at the foot of my bed, looked me straight in the eye and calmly said "we are delivering these girls". My world dropped. To this day, the image and sound of her telling me those 5 little words is still burned in my memory and brings me to tears. To her matter of fact statement I replied, "No we are not" and she said "oh, yes we have to". As soon as she uttered whose words a slew of people flooded my room and began preparing for what was to be the delivery of the youngest babies in my small town in over 20 years. Babies born at such a young age in my area are typically transferred 2 hours away to the larger university hospital. There was no time for that in my case, 2 might be too late and one of the babies might pass away in utero if we waited.

I have no idea what time it was, but presumably shortly after 9pm the double doors of the operating room opened and I was wheeled head first into a room full of people. My husband had to stand just outside the doors and with tears flowing profusely from my eyes I told him I loved him and held up the sign for the same as my rock and support pulled farther away from me. I was then prepped for surgery including being put to sleep. Sometime during the operation I woke up from my sedation and heard the doctors counting CPR on Jillian, felt the tugging on my belly as my OB sewed up my incision, and couldn't tell anyone I was not sedated because I had a breathing tube down my throat. I began thrashing my head back and forth and gagging to make them staff aware that I was awake. I heard a nurse say "She is awake!" and then it all went black again. Apparently the anesthesiologist was not attending to me and sitting at my head like usual because he was needed in the care of my girls. At 9:37p Britian Dorothy Mae was born and at 9:38p Jillian Elaine Marie entered this world. By 11:30 I was awake from sedation.

Jillian weighed 635g at birth. Britian was 906g. Length measurements were not taken because it has no bearing on their medical care. However, a week later in the NICU I measured them and they were both about 14".

Sometime around midnight the UIHC ambulance team wheeled both girls into my room. This was the first time I would see them. It was all surreal. They were bright red, translucent, and tinier than anything I had ever seen before. Yet, they were both so perfectly formed. Beautiful long fingers, cute little button noses, a head full of hair, and dainty little feet.

After the girls were taken away and were on their way to the best NICU in the region things settled down a bit. I don't remember much about the next few hours, I was tired and starving that much I do remember. Sometime during the early morning hours I received a phone call from a Dr. in the NICU telling me that Jillian had crashed, they were keeping her alive for as long as possible but I needed to get down there ASAP before it was too late. This began the wheels in motion of either getting me discharged so I could drive myself down there (2 hours) or be transferred to that hospital so I could be cared for, monitored, and recover for a few more days. Thankfully insurance agreed to transfer me. By noon on the 10th I was well on my way down to UI.

And thus begins our 11 week journey and NICU roller coaster in which we prayed, cried, stressed, prayed and cried a lot more. Those 11 weeks were a crash course in medical terminology, learning to advocate for my girls, and piles of paperwork as I navigated the maze of services they needed and deserved. And while 11 weeks might sound like an eternity I am grateful it was only 11 weeks. Considering their extreme prematurity 78 days in the NICU is a very short stay. Friends that I met along the way with babies born at similar gestations were all in the NICU for well over 100 days.

Those 78 days etched into my heart an experiences and emotions that I will never, ever, ever, forget. I don't know how I will feel in 4 short weeks when the girls turn 1. I will be post partum with baby #6 (a boy) so I may very well be an emotional wreck. However, I know I will also feel grateful, thankful beyond expression, and elated that we've made it this far. There were times, especially during those first couple of weeks that I was in the depths of despair thinking about all the problems and issues my girls might have for their lifetime. Thankfully, in the midst of my uncontrollable crying my husband reminded me that worrying wasn't going to do any good and that we would be able to handle whatever happened with the girls.

Britian then. . .
Britian now!! 
Jillian then. . .
Jillian now!!

Wednesday, January 11, 2012

NICU videos on YouTube

It has been nearly a year since the girls' birth and I still cry like a crazy woman when I watch micro preemie NICU videos on YouTube. Why do I do this to myself? I need to just stay far away from YouTube until that spot in my heart is healed a little more, if that is even possible. However, I do have to say that watching these videos or hearing other micro preemie stories makes me count my blessings 100 times over. So many micros that were born later than my girls had to spend a considerable amount of time more than what we did in the NICU. The more stories I hear about make me realize that a mere 78 days in the NICU for 26 weekers is a miracle beyond description. Their struggles pale in comparison to what other little babies have had to (or continue) to endure at the expense of being born so early. How will I ever communicate the depths of this miracle to Britian and Jillian as they grow up? I will pray that when the time comes for these conversations that God gives me the words I need to sufficiently tell my girls what beautiful blessings they truly are and how He had His hand upon them every single second of their tiny lives.