Struggles? Nah...not us.

Dear Monster,

   You have been through so very much in your short little life. Every once in a while I get frustrated because of how slowly I feel like things are going in your development. Your development is completely normal for a preemie but sometimes it feels like things just draaaaaag. When these days happen I flip through all of your baby pictures and each and every time I am just astounded at how much you've grown and how many steps you've taken in such a short amount of time. You're kicking butt little man!
~~~

Hello readers! Today I'm enjoying a day off which will be few and far between in the the coming weeks. So, I'm sitting with my Monster, catching up on some shows that I've missed, and making myself some leftover spaghetti. My plan for today? NOTHING! Fantastic, yes?

Anyway, I'm writing today because one of my fellow Mommys on CafeMom asked me a question recently. I was asked to fill out a form for their "Mommy Monday" for one of the groups that I'm a part of. It asked questions about Liam and when he was born and I filled it out with his preemie information. One of the moms was SO curious about preemies! She asked so many questions and was grateful for all of the information that I was able to give her. The question that really stuck with me was, "What are the struggles that you have gone through with a preemie that you wouldn't have if he was born on schedule?". The only answer I could give her was, "I honestly don't know."

Sean and I talk about this a lot. Obviously, we had never dealt with a premature child before, or ANY child for that matter! Everything that we have been through with Liam has just seemed like...oh, I don't know how to describe it. I has just been what we had to do, and what we had to do next, and next, and next, and next. Nothing has really seemed strange or different to us because we have no reference point for any of this. When we talk to other new parents it's a shock for us to hear that every baby didn't have to stay in the NICU for so long or that every child isn't just automatically sent home on oxygen. So, after talking with a couple of friends about their "normal" baby experiences, I have a better reference point and I have been able to recognize some of the struggles we have been through.

Having a child in the NICU is like adopting a puppy then having to just sit around during the waiting period while they review your pet ownership history and make sure that you're an okay owner. Having to walk away from the hospital and my child once I was discharged was one of the most painful moments of this entire experience. Having to trust the staff with my child that I had barely gotten to spend any time with and hardly gotten to know or bond with was...some kind of awful. We went back to the NICU every day, twice a day. We got so many pictures it was a little ridiculous. We knew his medication schedule, what tests were being ran which days, who his nurses were and their history with the hospital, his weight, his height. We knew everything! But every night, we had to walk away. Awful. Just awful. This was our biggest struggle. There was feeding through an NG tube (a tube that goes through his nose and into his stomach so that he could be fed) then a bottle, healing the hole in his heart, blood draws, testing, physical therapy, medications out the wazoo, oxygen levels and respirations that just never wanted to line up, beeping...always beeping, first baths, first outfits, first visits, first sounds, cuddles, family visits, and eventually, car seat testing and infant CPR classes. All of this while he was in his tiny incubator. Every time we touched him it had to be with sterile hands. I remember being frustrated because the foam stuff would make my hands cold and I didn't want to touch him with cold hands. They weren't joking when they told us in the video, and later in person, that there would be good days and bad days. Liam would make amazing and astounding progress one day then we would come into him struggling with even the simplest of things the next day. Such an intense mind warp! We learned to not really get worked up or excited about things like being able to stop medications, pulling his NG tube, or removing IVs. They would tell us it would be happening tomorrow, then something would happen and we weren't able to move forward with that step. We learned to just enjoy our little man and not make any assumptions or big goals. I didn't realize that the excitement of development was something that we normal other parents and was something that was taken away from until much later. The worst part was that every single time we went into the NICU it was like we were being tested. Like we were being watched to see if we were going to be good parents. This is kind of a double edged sword. You definitely need to be a different kind of parent when you have a premature baby and it is important that educated people have a chance to teach you and hold your hand through some of the things then monitor you as you learn and start doing things on your own. It is awful because we truly felt that if we did even one thing wrong, we were judged unworthy or incapable. Most parents don't have to deal with this scrutiny and judgement. I felt like I was auditioning to be my son's mother. Not pleasant. But, apparently, we passed because......

....Eventually we were actually able to bring Liam home! INSANE! We were convinced when we went in that morning that something new was going to come up and we wouldn't be able to bring him home. But we did. He came home on Oxygen, Iron, and Prevacid. He was on Similac's NeoSure formula (the MOST expensive formula EVER!). We had a nurse come to our home to give him his RSV vaccines once a month for 5 months (each of these injections costing around $1,200). He was taken to his Pediatrician's office once every other week or once a week to recheck his SpO2 to see if he still needed the oxygen. We had a physical therapist coming to the house to test him and make sure that he was on track developmentally. We were advised to not take him outside often or have many people over to the house. For the first month that we were home we were completely overwhelmed and trapped! During this time, Liam continued to struggle with his acid reflux. He couldn't sleep flat. So, Sean or I had to either hold him or watch him while he slept in his car seat, bouncer, or swing. Life was NOT wonderful. I spent a lot of this time reminding myself that at least he was home, happy, and healthy!

Liam is now almost 8 months old (5 1/2 months adjusted)! He is off of oxygen and all medications. He is still on Similac's NeoSure formula but he is now down to the 22 calorie mixture instead of the 26 calorie. He eats solid foods, rolls, sits while assisted, scream talks, loves standing while assisted, remembers some people's faces, smiles, has separation anxiety, loves Legos, is teething, and is about 2 seconds from crawling. He is still a very small baby. He is only on the 10th percentile for weight and the 15th percentile for height...and that's on the preemie scale! He's still not even on the percentile chart for normal kiddos. He has made such amazing progress and every time I look at him I am just in awe. His strength is so freaking inspiring for me! He's my hero and he's only 8 months old! :D

The last question that the fellow Mom asked me was if I felt anger or resentment at the entire situation. I hadn't until I really sat down and thought about everything my tiny little monster had been through. I'm upset that he had to go through any of this! He deserved to just pop out and start his life like a normal baby. He shouldn't have had to work so hard during the first months of his life. I believe it will make him a stronger person but, man, it kills me. I wouldn't wish that beginning on anyone. I'm a little resentful of my own body for not being able to support him as long as he needed but that's something I am always working on. I just keep reminding myself that there was nothing I could have done differently. I did everything I could from the cerclage to the bed rest to the NICU stay. Sean and I focus on the triumphs and forget the struggles because, until it was brought to our attention we really didn't realize how difficult things had been for our tiny family. So, we choose our attitude and move forward with hope and optimism! After all, things could have turned out much much worse.

Have you ever gone through something that had a large impact on you, but you didn't realize it until after you had trudged through it? What was it? How did it effect you?

I think that's it for me today. Time to go curl up with my baby boy and wait for Dad to get home. Sean had his motorcycle repaired this week so I'm sure he is going to want some "Man and his Motorcycle" time when he gets home. I'll post some pictures later this week. :) Happy Friday Everyone!