Kennedy’s the CHS March for Babies Ambassador!

Kennedy’s the 2017 Charleston March for Babies ambassador, and today was the kickoff lunch! It was such a great time to be in the room with the other teams, each full of people ready to help support the March of Dimes mission.

Check out the cool video about her story!

If you’re compelled, we invite you to donate to her team here!

We are soooo thankful that we get to share our lives with our precious girl! She’s a warrior disguised as a sweet, perfect human. 🙂

 

Kennedy’s My Fave!

What is it about babies that makes them so darn adorable and addictive??? Yesterday at work, one lady brought her 6-month old baby (because her baby got a fever and had to be picked up from daycare). The baby was so quiet – she didn’t make a peep all day! Somehow just seeing this sweet little peanut at the office made me want to literally go running home to my baby!!!

I ended up working longer than normal yesterday, and by the time I left I really couldn’t wait to get home! When I got through the door, Kennedy was waiting with a smile. That girl is too much! I just want to hug her all day, everyday! She’s really into high-fiving and making funny faces right now, which makes it even more fun when she greets you.

As it turns out, I did get to spend a ton of time with her yesterday, because that little night owl didn’t go to sleep until 1:30am! She has more energy than anyone I know. Foolishly, I thought putting the cool projector on would mesmerize her enough to fall asleep. That backfired. She did find the projector to be mesmerizing, but it just wound her up more!! She stood up in her bed, started pointing and oohing and ahhhing at the stars on the ceiling. Finally I just caved and held her til she fell asleep. Oops. I completely realize that I ended up wasting my time because ultimately picking her up just encourages her to do that again to avoid going to sleep, but 2 hours of that was enough for one night. 😀

She’s my only baby, and as mentioned in other posts, will always be the only baby. So, to be honest, I don’t really care if I “spoil” her or if she likes to be held all the time. She’s so special and with everything she went through when she was born, I want to snuggle her and don’t feel guilty about that at all! It’s really crazy to look at her now and imagine that she had a rough start. You would seriously never know. She’s my little Power Preemie who’s capable of anything! I’m ready for this girl to start talking and share all of her thoughts with us! She’s only one, but she’s had such an interesting life already and I’m sure she has tons of cool things to say!

Me and Miss Munchkin

Me and Miss Munchkin

 

The NICU is hard – Even 9 Months After Discharge!

Holy cow, guys, the NICU is hard! My daughter is doing amazingly well, and turns 1 soon. She is also going to be the March of Dimes ambassador for the Charleston March for Babies in 2017. To help promote the event, there will be a video to share Kennedy’s story.

A few days ago, we shot an interview with one of her doctors in. the. same. room. where she was. That was completely unplanned. We knew we were shooting in one of the NICU nurseries, but had no idea it’d be in her module. We walked in and I just started crying!!! I was staring at the spot where I spent weeks and weeks of my life.

My emotional response caught me totally off guard. As I said, my daughter is doing amazingly well, and I was there for a HAPPY reason! Before we got there I was so excited to see everyone, but once we got there I was a mess (but I was still super excited to see everyone!). That’s the thing about the NICU, you really just don’t know what’s next – even after you’re gone, apparently! If we would’ve been in the location where she was when she had the lung condition, I probably would’ve lost my mind! It’s just so crazy how you don’t think that things will effect you one year later, and particularly when they’re positive things. I guess when things are happening you’re just taking everything one day at a time, and when you’re on the other side of it, it can be overwhelming.

I’m thrilled to be one of the NICU success stories! Kennedy’s story is amazing, and to look back at everything that’s happened over the last year, it’s mind blowing. This little girl went from being 12 weeks early and on a ventilator for a long period of time, to leaving the hospital on her due date and breathing on her own, to being almost one year old and on track with her birth age  – and has been for several months (which her Early Interventionist has said is statistically pretty unheard of). Kennedy’s the strongest person I know – quite literally now, I’ve never seen another baby with actual muscles. I am pretty sure that I need to get in shape before she forms thoughts that she’ll remember because otherwise she’s going to be putting me through some kind of 5am bootcamp to keep up with her!

Back to the NICU to celebrate Kennedy’s birthday, my husband and I made 5 care packages for NICU babies who will be born on her birthday this year. It’s nothing big and it’s nothing super exciting, just a few helpful things and a birthday card for the new baby from our family. But, 1 of the 5 packages had a more significant gift in it – it’ll hopefully go to a baby who is born in her birth hour! I’m hoping to find her closest birthday twin. 🙂 I’d love to chat with her birthday twin’s family and be there to lend an ear when the NICU gets tough or scary. Something about being in that environment changes you forever. For real.

The NICU that she was in is really interesting. There are two main sections, and each section has 2 rows that face each other. On each row, you’ll have about 8 babies (I’m happy that I’m far enough removed that it’s no longer a vivid picture burned into my mind). So you have at least 16 babies in very close quarters. It can be loud. It can be scary. It can be amazing. It can be touching. Because of HIPAA, obviously no one from the hospital can tell you anything about anyone other than your own baby (and let’s face it, you’re so wrapped up in your own concern for your baby that the stress of the rest of the babies would set you over the edge!), but because you’re in super close proximity to the other babies, you sometimes hear words or treatments or can see their isolette and it’s really challenging to not compare.

For example, in our case, there was a baby who was older than Kennedy, born earlier than her, and who was already in the hospital for quite some time when we arrived. This baby was a warrior. She had a tough road, but she was kicking butt, until one day when she suddenly got sick (or had some kind of emergency – again, because of HIPAA, we have no idea what went on.), and went back on a ventilator, had all kinds of other interventions, and from what I gather, didn’t make it (although I don’t know for sure because we were transferred to a different floor). When we were next to that baby (as in, an IV pole and a rocking chair away, literally), it was tough to not worry. We were like, oh my gosh, she was fine, and now she’s back on the ventilator and now she has this and that! What if that happens to our baby???? But, we had to constantly remind ourselves that we didn’t know the story. We had no idea what that baby’s medical concerns were, and that we couldn’t compare. It can definitely be a mind game with yourself.

The NICU is the sweetest and saddest place in the whole world. Miracles happen every single day because of amazing doctors and nurses who dedicate their lives to these newborns, babies who are beyond strong and are doing amazing things well before they should be living in the real world, and of course with the help of some technology. But really, it’s the people – the medical team and the babies who are all special people who do extraordinary things everyday. I think it’s impossible to be in that environment and not leave with at least some positive memory… I guess maybe it does make sense to be emotional. After this last visit, I know that those feelings will be with me forever. I am so thankful that we met everyone we did, and that they all played a part in making sure Kennedy was healthy, happy and got home with us where she belonged. I am also thankful that Kennedy will never remember her days in the hospital, but that she will never know a time when those people (who have now become friends) weren’t in her life.

Kennedy’s Story

I knew my whole life that I wanted to have a baby, and ideally a little girl. Growing up my best friend, Caleigh, and I would always play “babies.” In our make believe world (which included “Babyland”) there weren’t ever husbands, it was just us and our babies. I had a Baby Shivers doll named Misti, and she had a Cabbage Patch Kid named Tina.

Literally, having a baby girl was always part of my plan, which began around age 4. Fast forward about 30 years, my husband and I were ready to have a baby.

We are both essentially only children (we each have a half brother, but neither of us grew up with our brothers, so we and our brothers all grew up as only children), and knew we wanted to have an only child too, and we were both totally hoping for a girl.

We started stalking ovulation kit readings, pregnancy tests, the whole deal. Month one I had a chemical pregnancy, month two I didn’t pregnant, and then month three, success – I was pregnant! We didn’t want to tell anyone until 12 weeks, and we had a few ultrasounds before that point. Unfortunately, that baby wasn’t to be. I had a miscarriage and a D&C at 10 weeks. That was beyond depressing and sad. Lots of people want to tell you things like “at least it happened now and not later,” etc., but that doesn’t make you feel any better. No matter when a miscarriage happens, it’s a big deal to the people experiencing it.

Doctors told me to wait a few months to try again, and when it was time to start trying again, we had success on the first month! And that’s where Kennedy’s story begins.

Because of the chemical pregnancy and then the miscarriage, I had my first ultrasound at 6 weeks, and the peanut had a heartbeat!!!!! We went back at 8 weeks, and things were still awesome! I was soooo desperate to get past the 10 week mark. There was a constant fear that something would happen again, which would be devastating. Thankfully things kept clicking along perfectly. Once we got past the critical 12-week mark, I couldn’t wait to find out who was inside!!

I accepted that I could have a boy or a girl… until the ultrasound tech said during the 12-week appt that my baby’s “nub” looked horizontal. A horizontal nub means a girl! I’m not a fan of wives tales, but the Nub Theory is actually based in some anatomical science, so I was pretty pumped that it looked like my dream was coming true! There was no way I could wait until the 20-week ultrasound, so I made an appt at a local ultrasound facility and found out our baby was a GIRL!! Brian and I were both ecstatic, and so were our families when we shared the awesome news.

Things kept going along as planned… until the 24 week appt. when my blood pressure got nuts. I ended up spending the night in the hospital. I totally thought I was going to go to the hospital, get some tests and leave. Then they handed me a gown and told me I was being admitted.

Long story short, from that point on, I started seeing a high-risk doctor several times a week, taking medication, and also continuing to see my regular ob about once every week or so. No matter how much medication or which type of medications I took, my blood pressure crept up and up. It was regularly around 170/100+, and finally got to 176/112 or so, and I had to go to the hospital. I went to the hospital where I planned to deliver, and this time I was like, okay, I’m going to go, spend the night, and then go back to my high risk doctor on Monday. Nope. They did keep me overnight, but then they told me my lab work was high, I had preeclampsia, I was delivering the baby that morning, and they sent me to a different hospital to have the baby.

I was on Magnesium (totally necessary, but also a totally miserable experience), put in the ambulance, and transported to the other hospital. The NICU doctors came down to talk to us, gave us the 24-27 week pamphlet of what to expect, and we were ready to become parents (well, as ready as you can be at 27 weeks). To our surprise, the amazing doctors ended up stabilizing me and sending me to antepartum. Those high risk doctors thought they could get me to 37 weeks – they weren’t sure if that meant I’d get to go home, be on bed rest, stay in the hospital the whole time, etc. The plan changed daily as my blood work continued to deteriorate. One the 4th or 5th day my blood work was super crazy again (my mom said at one point my blood pressure was 190+/100+! I ended up with severe preeclampsia or early HELLP Syndrome (I was pretty out of it because of the Magnesium… I had 3 24-hour drips of it – and Brian said the doctor said I either had HELLP already or it was right at that point.).

A quick c-section at 27 weeks 6 days resulted in our perfect little Kennedy! She cried when she came out, opened her eyes, pooped, grabbed my husband’s finger, and was only on c-pap. Who could ask for more!!!

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She spent 12 weeks and 1 day in the hospital and went home on her due date! She had a tough road at the beginning. After her initial delivery room success, she ended up developing a serious lung condition in one of her lungs (it’s a condition that most often effects both lungs, and treating a unilateral case can be more challenging because baby equipment is too tiny to treat lungs independently – so what you do to one lung, you do to both, and in a case like hers, that meant a constant dance between improvement in one lung and harming the other). Thankfully that resolved when she was about 4 weeks old, but we still need to be cautious even now about avoiding sickness since preemie lungs are already weaker than full term babies, and a preemie with a lung issue is even more sensitive.

We found out the day that she went home that when she had the lung condition, she was the sickest baby in the NICU. I’m so glad we didn’t know that when it was happening! The NICU is a roller coaster that you can’t prepare for – and there are days that feel like 5 years, but somehow you get through (I’m still not sure how, but you do).

Her doctors and nurses were FANTASTIC!!! I really couldn’t ask for a better team. They were so incredible, constantly working to ensure she recovered and keeping Brian and I from losing our minds with fear.

Fast forward to now and we’re very close to Kennedy’s one year birthday!!!! Preemies typically take about 2 years to catch up developmentally to their peers, but Kennedy is (and has been for several months) almost exactly on track with her birth age. Her early interventionist said it’s mind blowing, and she’s never seen a preemie like her!

Kennedy is the light of our life. We can’t believe we are so lucky to have her. We have the most perfect human in the world as far as we’re concerned. I don’t know what she’s going to do when she grows up, but I know it’s going to be epic. That girl is a fighter. She’s tougher (and cooler) than anyone I’ve ever met.

There are many other things that happened between Kennedy’s birth day and now, but those are stories for another day.

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