Wednesday, April 28, 2010


I have sat down to write this entry a half dozen times. Now a normal entry will almost always take several different sit down periods anyway in between naps, bedtime and life as it is. But this one is different. I am having a hard time collecting my thoughts into any sort of order. Bear with me because I'm pretty sure this entry will be as scattered as I am, though maybe you should be used to that by now.

I guess I shouldn't be so surprised. As we are preparing to celebrate our sons first birthdays, the feelings over the past year are just bubbling out. The magnitude of emotions honestly have rattled me a bit. For the most part the feelings are of sheer GRATITUDE. The kind that make you want to shout from the rooftop: WE MADE IT!!!!! The first year!!!!

I remember sitting in the NICU week after week and thinking that this would be the milestone that I would finally be able to sit back, rest my head and breathe easy. In many ways I am finding that to be true. Maybe not quite sitting back far enough to put my feet up and rest my hands behind my head but what parent of little ones can? But breathing easier we are. We have found our groove, a routine. We have settled more and more into a sense of normalcy. Yes our normal is peppered with weekly appointments for physical therapy, feeding therapy, home nursing check ups, helmet adjustments, etc but at least the boys don't know any different. To them right now, they have several more regular people that like to "play" with them.

I am especially feeling a little less harried now that we have found this routine and that we have gotten the boys to be able to eat, play and even nap together. It already feels so long ago the days where I had to feed to give them their reflux medicine a full 30 minutes before bottles and then feed them at separately so I could attend to each one with choking and gagging issues. It would take 30-45 minutes each feeding having to lay them on a pillow on their sides to feed so they would be less likely to aspirate (choke on the liquid). During all those months, they would  nap on different schedules. I did however enjoy the one on one time with each baby during those months but the feeding times alone felt never ending. Being able to feed them together finally and put them down for naps at the same time is a little paradise now. This is just one reminder of how much we have accomplished this past year, little and big!

This birthday, this milestone feels like a very big deal. I know there is no magic that says now nothing bad can happen after May 2nd, that its all easy streets from here. But still, it does feel magical. I have our boys, they are home with us, they are doing more than well, they have had so many obstacles in their short life but they are THRIVING. I am such a lucky mama!!!!!!

Soooooo I guess I didn't expect the other feelings to come along. The ones that are reminding me of the really hard times, the beginning, those never ending months at the NICU. More and more lately I wake up with these thoughts in my head. Kind of on a replay of sorts to whatever we were going through this time last year. Life is so good right now, why are these feelings getting muddled in with the celebratory ones? I have even been waking in the middle of the night thinking of the hospital and those 24 hours leading up to their birth and the panic I felt every time the army would rush in to take a better look at the boys on the monitor and say we might not be able to put off their delivery any longer, one of the boys was in distress again, getting the shots to try to quiet the contractions, only to have that happen several more times day/night before they actually had to deliver them.

I still remember the fear, terror of whether they would be okay, and after they were born that surge of emotions of these were our boys, and it was like another blogging mom so beautifully describes: "after your children are born its as if your heart is now beating on the outside". My heart was instantly and completely owned by those little one pound gifts. As they wrapped their sweet itty bitty fingers around ours, I wonder if they could feel the power they already possessed over us.



I am wondering if these feelings have just been tucked away and are now coming back because we could never truly acknowledge them then. We had to blatantly ignore these fears, the knowledge of how vulnerable the boys were, how fragile life is just to get through the day, the moment. We only half listened as the nurses and doctors had to tell us all the "might be's" of those early days/weeks. The complications of being born too soon, too little, with all the possible and potential future side effects of medications, treatments, surgeries, all the while noted that there were no other options to any of the above for their survival. We had to take these risks in order for them to survive, no matter what the fears of the future might be.

We needed to be strong for our boys, so we really couldn't possibly sit with those fears for more than a moment at a time or we couldn't function. All of those feelings and fears apparently are still there to some extent and seem almost to be waiting for me to have the energy to deal with them. I think over the course of these months that I have chipped away at them little by little. Immediately we are greeted by them like a long lost "friend" whenever the boys have gotten sick, have another surgery, another hospitalization. Those feelings are just waiting for us until we acknowledge them and bid them farewell. Well I'd like to just hold up a HUGE sign in summary to them: yes we know how lucky we are, every day we soak in their joy, their laughter, even their whines and tears. It took almost two whole months to hear their first cries and yes sometimes when they are crying or yelling for me, I still remember how thankful I am that I can hear them (now now I didn't say ALL the time).

I'd like to think we take nothing for granted because we know very acutely we could have lost them many times. We were supposed to be "preparing" ourselves to lose them during more than a dozen ultrasounds because of their restricted growth and placental problems that started at just 20 weeks as we quickly needed twice weekly ultrasounds because of blood flow problems to the placenta, then periods of distress that started happening at just week 26 when their heart rates would take turns plunging, then their birth that came months too early at just 28 weeks of our pregnancy.

We were supposed to prepare ourselves when Alex had to have his back closure repair surgery at less than 48 hours old when he was just over a pound and a half. Our neurosurgeon is considered one of the top in the area but even he had never operated on this small a baby with a very large opening. We later learned many people in that operating room did not think he would make it.

We had to prepare ourselves for many days and weeks when both of them struggled with breathing issues and countless times of watching them turn blue even while on the ventilators, and receiving caffeine treatments to keep their blood pressures up. We were supposed to prepare ourselves to lose them during their turns fighting infections and becoming septic, needing countless blood transfusions and scares of NEC bowel disease.

We can acknowledge all of that, we LIVED through all of that, we do not need to live through it all again so go away negative feelings, we are done with you. Can't you see what we have now instead?

                                   August 16th 2009:  the day we got our whole family home......

We have two living breathing beautiful miracles. Together these amazing boys have defied all of the "statistics", sooo many of the "possible complications". I don't know what we ever did to deserve these incredible gifts but I'm keeping them and every single day I am so thankful for them. So go away negative feelings because this weekend is all about CELEBRATING!!!!!!!!


caryanne said...

Happy Birthday boys! Way to go!

We had a HUGE birthday party when my boys finally turned 1. There were over 50 people at my house to celebrate making it through the first year. It is such a HUGE milestone for our little preemies!

Enjoy the celebrations! And enjoy the 2nd year...believe me, it flies by!

Liz Keicher said...

I'm sure a wave of emotions and memories are flooding you now as the boy's FIRST BIRTHDAY (I can't believe)happens. You guys prepared yourself for what would get you through everything: your love for your boys! Alex and Nicholas are such fighters, this first birthday is a HUGE deal, to celebrate everything they prevailed over this year. Enjoy the best gifts ever!! And hay Birthday to the boys from us!!

cfallone said...

Holli, you deserve to celebrate!!!! Celebrate big and it's okay to not forget how far you have all come. All four of you are stronger because of it and you have all thrived. You are a beautiful family. And, by the way, you always make me cry when I read your blog :)You should write a book!

wrensmommy said...

that was a great post! the one year mark is magical! it made me tear up thinking back to all we went through... i also have sort of pushed it to the back... i guess those feelings are always lurking somewhere- waiting for a reminder to bring them out into the light.
congratulations on your beautiful babies!!

Stephanie said...

First birthdays are a BIG DEAL! Because there is SO MUCH to celebrate! I'd say you all "made it" with flying colors. Happy Birthday to your two beautiful, sweet boys!

Jill said...

Wow, I'm in such awe of your little boys. They are such an inspiration and have come so incredibly far in such a short year. Amazing.

Colleen said...

You certainly have so much to be thankful for! Not that it makes it any less unsettling, but I think it's totally "normal" to feel how you are, because I felt many of the same feelings on Nate's first birthday. I think it's just part of the grieving process. The first birthday was HARD. The second birthday wasn't easy either, btw! It's like a continual grieving process, but it gets easier with time. Also, I read an article about how parents who have spent time in the NICU often have Post Traumatic Stress Disorder or something similar. Which makes sense when you're talking about waking up with these flashbacks!

Anonymous said...

I've just found your site on FB. I can't remember who I found it through but I was born & raised in Rochester, Chili to be exact. I am an RN & my first job was at Strong in the unit newborn to 1 year(old Hospital) & took care of children with Spinal Bifida. This was 41 years ago!
I hope the boys had a terrific first birthday. You are amazing parents & have been through more in a year than most people in a lifetime. I will keep you & your beautiful family in my prayers.
I think your site sharing honestly your thoughts & feelings will help many other parents understand their feelings are normal & they are not alone.
Thank you!