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.