Up To Your Toes: Prematurity

Showing posts with label Prematurity. Show all posts

Tuesday, April 21, 2015

We Are Marching...Saturday!

I can't believe it's already March for Babies time!

I've never had to worry about the weather being anything other than 70 and sunny (that's LA living y'all), so we'll see how things go with the temps in the 50s and possible rain. I'm sure it will still be fun and hopefully we can keep the kids in good spirits!

And I'll be walking 3 miles almost 9 months pregnant. That should be fun. I did "run" a 5k 36 weeks pregnant with Ben, so it's apparently my thing.

I wanted to do 1 more shout out for donations and supporters of our team! The twins are trying to reach their $100 goals before Saturday and they could use your help! You don't have to pick favorites, but you can donate to Jackson HERE and Amelia HERE. They'd love your support!

Amelia was such a great helper the other day and helped me tie dye our signature team shirts (for the kids, because they keep growing on me!)

Please note: Only my calm little girl was involved in this project. The wild and crazy boys were stuck inside while we tie dyed. She actually listens and follows instructions, key milestones to hit before allowing your 3 year old to tie dye anything. Just in case you were wondering ;)

She was so proud. And so excited mommy let her help. She managed to only get a little on me (none on her...amazingly), so we MIGHT try this project again with our leftover colors. MAYBE. When I feel very brave and calm.

Back on track,thanks everyone who has sponsored our team so far and those that will do so! I'll let you know how Saturday goes...and hopefully I'll still be pregnant to tell you all about it!

Monday, November 25, 2013

The Truth About A Preemie

I have been writing this post for a good 2 months now and not sure if I should publish it. The emotional posts seem to be the hardest to hit the publish button on. Don't forget to link up to my World Prematurity Day post if you haven't already! I'd love to hear your story, and others would too!

So for Prematurity Awareness Month...here you go.

The truth about a preemie is....you don't always see the light at the end of the tunnel.

From the day they were born until now, I've never really known when I can stop thinking about the twins being premature and can start thinking of them as average kids. Or if they ever will be "caught up" and "normal" and meet all of the milestones on time. From their health to their development, I'm not sure "preemie" will ever be a term they completely outgrow.

The truth about a preemie is....even if mom seems to have her act together, she probably doesn't.

I've been more stressed out in the past few years then I have all my life. I made it through college under less pressure then I sometimes feel with when dealing with the twins. While I can see some parts of it are typical new mom of twins woes, a lot of my stress was from their health and prematurity. I feel like I've done a good job keeping a smile on my face, but I'd be lying if I told you I didn't break down pretty frequently, crying to my husband about how I can't handle it. As time goes on and I look back on the really rough days when the twins were first born, I think I'm still processing how difficult that was for me. I'm still coming to terms with the situation.

The truth about a preemie is....it's no ones fault.

I've had to tell myself this a lot. It's not their fault they were born early. It's not the doctors or nurses fault. My biggest struggle has been coming to terms with that it's not my fault.

The truth about a preemie is....you don't know how to talk about it to people with full term kids.

How do I explain their birth and hospital stay? How do I describe their health to a stranger so that they take me seriously, but not so serious that they're scared off? They certainly don't understand CPAP, IVH, PDA, and all the other things that I talked about constantly when the twins were little. Even now that they're 2, people see them as healthy, active kids, but how do I tell them we can't go somewhere because it has a lot of smoke and I worry about Jack's lungs. Or the reason you can't understand Jack when he speaks is from sensory problems from his prematurity. It seems like I'm just making up excuses for him being a bit behind...or still drooling like a teething 6 month old. It's hard to understand the preemie world from the outside.

The truth about a preemie is...you can't hear another preemie story without your eyes filling with tears. Good or bad story, your heart aches.

The truth about a preemie is....you think they've amazed you by just being alive, but they continue to amaze you every day by their incredible strength to overcome every challenge put in their way.

My babies have faced a lot of challenges already. I don't think they even realize it. They will continue to face a lot of challenges and I know they'll get through them. I just hope I'm strong enough that I will get through it all too.

The truth about a preemie is....they're perfect in every way.

Enjoy this little blast from the past ;)

Sunday, November 3, 2013

Prematurity Awareness Month

November is the month of preemies! November 17 marks World Prematurity Day and I'm happy to participate here on this little ol' blog of mine! I want to use this as a place for preemie parents, friends, family, supporters to connect so I'm hosting my first ever prematurity link up!

So for people new to my blog I'm going to give you a little bit of OUR story and how we got here...

Say hello to twin A and twin B when we first met them in January 2011! We were so excited to see 2 healthy babies and 2 heart beats. A bit relieved to see that very obvious line dividing them because that meant we were having fraternal twins (the lowest risk of anything dangerous happening)!

They gave me a due date of September 6 and sent me on my way! We were so excited. We found out soon after that we were moving to California in June and once again, I was relieved, because I'd only be about 26 weeks pregnant and would have plenty of time to get out there and get settled before the twins were born.

Well, it didn't quite work out that way.

In the middle of our move, while I was staying at my parents house in Pennsylvania and Tom was getting our lives settled in California, my water broke and landed me here...

In the hospital, very grouchy, hooked up to monitors pretty much 24/7. It was fabulous. My water broke at 26 weeks 2 days pregnant and the plan was to stay pregnant as long as I could.

As long as I could didn't last very long, because 1 week later I got an infection, was rushed into an emergency c-section and delivered my twins on June 9, 2011 weighing in at 2lbs 1oz and 2lbs 2oz.

Jackson was immediately intubated. Amelia was breathing remarkably well for being so tiny. I got to see them for a few seconds before they wheeled them off to the NICU.

From there, we spent 54 long days in the NICU. We faced many many challenges along the way that could have possibly derailed our departure, but everything seemed to work out in our favor to get them home so early. From there, we spent many months dealing with the complications of prematurity. Jackson was on oxygen for 14 months and spent a lot of hours at the pulmonologist. Amelia had to see an eye doctor a few times and has had some things come up with her heart (nothing serious, just things we need to keep an eye on). Both kids saw GI/nutrition to monitor their growth. Jackson has been in therapy for 2 years now and is doing well, but we still have a long way to go. Overall, they are both very healthy. A lot of things could have gone wrong and by some miracle, they all seemed to turn out ok. We're still not out of our prematurity days but as they get older, it's less and less obvious that they were born 3 months early.

I'd love for you to click around, check out the progress they've made, see how they grew, and you can find more details of their birth and our NICU stay if you go back to my posts from 2011. It's been quite an adventure, but I've found lots of love and support from other preemie parents so I'm hoping to add to the love and support by having this link up! It will run through the duration of November so check back frequently to see what stories have been added! Share with your friends so people can find my blog and the link up!

Thank you for everyone who has been a part of our story so far and for sharing the preemie love! Click on "Add your link" below to join in!

Friday, April 5, 2013

A Special Memory

I'm not sure I have ever shared this story with many people before. It happened right after the twins were born, there was so much going on, I'm not sure it was a top priority story. I started this blog later, after I had some time to collect my thoughts and emotions about the twins birth and their time in the hospital so I don't think this story has made it's way onto the interworld. But it's a special memory, at least to me.

The twins had to be born because I got an infection which meant Jackson, baby A, baby with the broken water, would also have the infection. I know I mentioned that in their birth story and I mentioned how sick I was after they were born. I fought through the pain and infection to go see them a few hours after they were born because I had only gotten to get a quick glimpse of them so far. I was wheeled down to the NICU and spent a few minutes with each one before I had to go back to my room.

Well the next day was even harder on me. I was recovering well from the c-section, had gotten up and showered, but the infection had me down and out. I was feeling awful. I was on several IV antibiotics, pumping around the clock every 2-3 hours, and had a very high fever. Tom wasn't getting in until that night and hadn't even seen the twins yet. I wanted to badly to go visit them and sit there with them but I just couldn't get down to the NICU. It broke my heart. That was the only day out of their entire hospital stay that I wasn't there with them.

I called the NICU frequently to check on them. Every time I pumped I'd call and make sure they were doing ok. The doctor came down to see me once or twice, mostly to get me to sign forms of consent to do different treatments and things with them (they needed blood transfusions, bili lights, medication, special IVs, etc etc etc). But towards the evening, when it became clear I wasn't going to get to see my babies that day, the nurses brought down pictures that they had taken and printed out for me of my babies. They said it would help my milk supply to be able to look at them while I pumped, but really, it just made my heart smile to see them. Tom got in late that evening and went to see them so I was so glad that one of us got to spend some time with them that day and they didn't have to feel too alone. I know they were in good hands with the nurses and doctors but they were so tiny, they needed their mommy and daddy too.

My mom actually framed the pictures and I see them as a read my babies their bedtime story and I'll always remember how far they've come.

Amelia on CPAP is on the left and Jack still on the ventilator is on the right.

It may not seem like much to anyone else, but the small gesture of someone taking a picture and bringing me a picture of my babies when I couldn't be with them meant so much to me. The nurses at the hospital took such good care of my babies and I'm so grateful to all of them for everything they did for us.

These pictures are a reminder at why we're doing the March for Babies and will do it every year. Even though the twins look so healthy now, they are truly miracles. They were very very sick and needed a lot of specialized care. The care and treatment they received were made possible by research funded by the March of Dimes. The treatments they received made it possible for them to live. 60 years ago, they might not have survived, just like my mom's twin brother who died the day after they were born prematurely. $.76 of every dollar you donate goes to research for new treatments and prevention, programs to support parents while their little ones are in the NICU, public health campaigns to make sure babies aren't born too soon, and so much more. So please help our team, help babies, and check out our fundraiser that is going on until tonight. You have no idea how much it means to families like ours.