How do you explain a micro preemie to a 5 year old…

As we approach the holidays, we drag out old ornaments and art projects that the kids completed and reminisce about those times. This always brings a little bit of a struggle for Noelle. She LOVES to put up the tree, help wrap presents and get everything ready. She knows that Santa comes, but she also knows the reason for the season and how important it is to celebrate “Jesus’ birthday!”

However, she had a lot of questions this year about her birthday. Wanting to know why her baby pictures were so “scary” and told me that they make her sad. I’ve heard of other preemie parents keeping the baby pictures away from the child until they are old enough to handle it. However, that’s Noelle’s history, that’s her past. Quite frankly, she still has oxygen and a feeding tube and I always thought her baby pictures were so cute. I was so used to seeing the tubes, lights, wires, IV poles….I didn’t even think about how she might portray these pictures in her curious mind. She has had baby pictures hanging on her wall since she came home…and I don’t intend to take them down. I decided it was time to explain….

Way easier said than done. She had tons of questions. She wanted to know why she didn’t have baby pictures without oxygen and she wanted to know where Andons baby pictures WITH oxygen were. I explained that babies are suppose to grow and cook in a mommys tummy for a long period of time. Andon stayed in for the full cooking time. However, Noelle was just so excited to see us that she came a bit too early. I told her that this was the coolest thing because mommy, daddy and Andon were able to watch her grow on the outside of my tummy instead of inside. I told her we were able to hold her, play with her, sing to her much sooner than most other babies. Her smile and amazement told me I was doing an okay job. I asked her if she wanted to see more and she said yes!

I have boxes of every little paper, every form signed, each and every blood pressure cuff as they got bigger, the bilirubin “sunglasses”, pictures upon pictures, every diaper size she went through (clean of course), each binky size, sweeties containers, outfits, hats, blankets, anything homemade by volunteers or nurses, surgery pager papers, “Drama Queen” pillows still in the same plastic bags, I even kept her first g-tube! I pulled all this stuff out and showed it to her. Patiently waiting to see if I had made the right choice to share at age 5. I did! She was amazed and astonished at everything. She wanted to look through every little thing and asked for explanations.

The outfits were a hit, the diapers were a hit, everything she looked at was filled with big eyes and “awww’s!” Almost as if something had clicked. She understood. She asked a few more questions…. For instance, why do her lungs need oxygen? My answer of her lungs being so small when she was born finally clicked. I hope a lot of things clicked. I explained the scary pictures. Even though, it looked like she was tiny with a lot of tubes….look at mom’s face!

That picture was the day I got to hold you for the first time.

Oh, look! That was your first bath!

That was the day you got to try out peanut (she knows peanut as her bipap machine…it just looks a little different on a tiny baby).

Look, this was the day we got to say goodbye to your warming bed (isolette) and you got to be in a big girl crib!

Look! This was your first Thanksgiving, Christmas and New Year! All in the hospital surrounded by people who love you.

We have pictures with each nurse, doctor and therapist. So, she wanted to know who they were….name by name…picture by picture. So we did. It’s been five years and I still know every name and face. I still know the smells, I still can hear the machines beeping … I’m glad she won’t know that part. Then, I was able to match faces and names to things she knew. For instance, Nurse Megan and Nurse Tonya made a lot of Noelle’s signs. Nurse Emily made her night night CD that she STILL listens to every night. It went on and on….

She just knew that each person holding her was smiling and happy to be with her. I explained that she spent so much time with these doctors and nurses…that they loved her like family.

It was a bittersweet evening with Noelle and I. We went through so much together and I felt like I finally got to share it with her. She needs to know how special she is, how loved she is, and how much people generally enjoy being around her and with her. She needs to understand what a true miracle she is!

As we approach Christmas next week, I’m reminded of all those babies, doctors, nurses, therapist and staff who will be at the hospital on Christmas. All the parents that will visit their sweet babies in the hospital on Christmas Day. Say an extra prayer for those. It’s hard to visit your child in the hospital on Christmas. However, the people that are there make it so special. I’ll never forget that. Say a prayer for the people working in the hospital on Christmas. They are leaving their families to take care of others. I hope they know how appreciated and thankful the parents are…even if they seem sad. It’s been 5 years….and I’m not sure if I’ve ever said thank you to those people. So… THANK YOU! Thank you not only for making Christmas special for those in a cruddy situation….but thanks for making such wonderful memories that I was able to share with my gal 5 years later. I’m so thankful that her baby pictures are no longer scary. The reason being because I was able to express the memories behind those pictures.

Merry Christmas from the Mikels!

Xoxo,

Stacie 🙂

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Old Times Revisited…

Ross and I just spent the last 45 minutes looking through old photos of the past 5 years. Most people look back on old photos and reminisce about how wonderful the times have been, how precious the memories are and how wonderful it is to look back!

Honestly, ours are painful. I cried… A lot! I look into all of our eyes in the pictures and see pain. Andon feeling so left out (yet, still smiling) and ignored. Ross having just blank stares. Noelle having pictures of barely surviving, hooked up to life support and in the hospital smiling. Then there’s me!

For the first probably 2 1/2 years after Noelle was born… My life was absolute chaos! I felt so GUILTY! Guilty that I couldn’t keep my baby inside and mad at my body for failing me and my daughter! Angry for not seeing the signs sooner that she was on her way! Mad that there was no turning back time to keep her in longer! Guilty describes me best. I felt like my body failed and was responsible for turning our lives upside down. Not to mention, I often felt guilty for waving my white flag and admitting that sometimes, it was easier to admit her into the hospital rather than be so sleep deprived that I screw up her meds (yup… That happened!).

Many of those pictures were from our first few weeks at home. Noelle spent 222 days in the NICU. Came home for 3 1/2 weeks and then went back into the hospital until a few days before her first birthday. I took a lot of pictures. The doctors told me that her getting sick would potentially be fatal… I felt like pictures had to be taken, just in case!

Because of this, I turned into the germs worst nightmare! I wouldn’t let anyone in our home without washing hands. I made Ross change his clothes after work before picking up Noelle. Andon and I stayed home with the exception of Noelle’s doctors appointments. I even fired our first home nurse because she was a smoker and just dirty and gross!

I had no friends! I didn’t let them in much, especially after having to quit my job! And realistically, who would want to be friends with me? I was a crazy fool.

Noelle needed nebs every 2-4 hours round the clock. Ross had to sleep at night so he could work and function during the day. Which meant I slept about 1 1/2 hours at a time, every few hours only at night. I had to potty train and somewhat pay attention to Andon during the day. I was a sleep deprived zombie! Most of the time, Noelle also needed meds round the clock (She came home on 16 medications)!

There was one day after staying home for a few weeks by myself… Andon was acting out (heck, I would have been screaming for attention if I were him) and Noelle was screaming and desatting like she did everyday! I was overwhelmed, sleep deprived and had a to do list of too many things. We were in the process of trying to find ways to save our home and avoiding bankruptcy. I lost it… Andon was in his room screaming, Noelle was downstairs crying and beeping and I locked myself in my bedroom bathroom and cried… For what felt like hours. Crying didn’t help me face reality. I pulled myself together, said a prayer and found the strength to carry on with the day. I always tried to put on a front when people called or came by… But I was miserable.

Honestly, I didn’t realize how miserable I was until I started to look back at pictures. It does give me a sense of sadness still today. How our lives were turned upside down in an instant…

Thankfully, the guilt and anger are gone. Replaced by a little bit of sadness. Our little family has been through a lot and much of our experiences have changed us. I’d like to think changed for the better. I’m a far more patient person now than I ever pretended to be before. Andon doesn’t seem to be too phased and can’t remember “BN… Before Noelle!” Ross still gives me that blank state occasionally when I talk too much about the medical stuff. Me? I’m a far better understander of people, life, death, hard times and how everyone (at one point or another) just needs a break!

Just putting it out there… There are a LOT of feelings that come with having a preemie and a special needs kiddo. It has taken me almost 5 years to admit this! Typically, when we say we are fine… We are not! Usually, when we have a super upbeat attitude about something medical or developmental… It’s because (partly) we are still convincing ourselves! We are far from super human… But would rather have a sleepless night researching a cure or cause than sleep not knowing what’s going on. I’ve heard a special needs momma does better research than the FBI… I’m almost positive this is accurate!

I guess my point is that, yes! I smiled and put on a happy face while my world crumbled around me. But really… What choice did I have? Pretty sure if I had acted the way I felt back then… I would have been put in the looney bin! Realistically, I didn’t (and still don’t) have a choice! This is our life! Sometimes it’s still miserable! Sometimes it’s absolutely awesome! Thats why its called LIFE! Just like any normal family… We have our ups and downs.

I had a doctor tell me in the NICU that Noelle’s life would be a bit of a roller coaster for a while. I figured that. However, I failed to realize that our whole family would be on this “ride.” Obviously, our “ride” isn’t over yet. I’m not sure what (if anything) I would change at this point. This is our life… It’s normal to us now! Looking back is hard… Looking forward is sometimes hard!

One day at a time is perfection!

Xoxo,

Stacie 🙂

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What’s The Big Deal Anyway….

noelle. This post may actually tick some people off. It may be totally relateable to others. I am absolutely perplexed why people think it’s their business to ask about my kid when we are out in public…..

Maybe its time to start turning the conversation around and asking them about personal things….

Let me set this up. Whenever we go out in public with Noelle and Frank (Frank the tank is the name of her oxygen tank)…people inevitably stare. They point. They whisper. Any sometimes, they come up to us. Sometimes this is frightening, but mostly it is just annoying.

We were in Target the other day shopping. Practically everyone shops at Target at one time or another and we happen to LOVE Target. I was loading Noelle and Frank into the back of the shopping cart when this woman came up behind me and put her arms on my shoulder and I quickly turned around (rule #1….don’t touch me if you don’t know me!). She layed her hand on my head (I can’t make this stuff up) and started to pray for Noelle and I. I was kind of shocked and to be honest, pretty mad that this lady was touching my head that I moved away from her. I’m all about being prayed for….but God only knows if this woman washed her hands last after using the restroom! She then asked me every question in the book about Noelle. “Why does she wear that oxygen? How long has she worn it? How long will she have to wear it?” Etc….this went on for about 5 minutes before I told the lady I had to go shopping!

I try to be as nice as possible when people ask these questions, because honestly it happens a lot. Quite frankly, we like the prayers (as long as they aren’t touching us unwanted) ….but the 20 questions game has got to go. As we walked away, the lady said loudly to her friend, “Oh, I feel so sorry for that child!” This infuriated me. I turned around and glared at that lady. Then, my mother’s voice went off in my head, “If you can’t say something nice….don’t say anything at all.” The last thing my kid needs is pity or anyone feeling sorry for her. To Noelle, this is her life. She knows no different. Does she realize she’s different? …Sure! Does she care? …Heck NO!

Another time, in Walmart (the first and last time I took her there) another older woman came up as I was turning to grab an onion. As I turned around, I saw this lady kissing Noelle on the forehead (Rule #2….dont touch my kids if you dont know them. Kissing them is grounds for me punching you!!)! I started to yell at this lady to get off my kid! I took a deep breath and explained that her immune system is compromised because of her lung disease. I told her we dont really appreciate strangers touching her as I dont think any parent would appreciate that even with a normal kid. Well, that started the line of questions… (Shoot me!)

One more example and then I’ll be done ranting. Another time while in a store (I believe it was Target…yet again!), this woman came up to us asking tons of questions about Noelle. Andon was with me as well and the woman didn’t as much as look at him. Nope, she downright ignored him. She talked directly to Noelle about how cute she was and how beautiful her smile was. Didn’t say a word to Andon. (Rule #3- If that special needs kid has a brother or a sister, pay attention to them too! They inevitably have had to deal with a tough transition as well. They deserve a lot more attention than they get!).

So, this leads to my point. Not everyone looks the same. If you saw an disfigured person at a store…would you go up to them to ask them what happened? NO! Most people would smile and nod in passing. I saw a man with a prosthetic leg in a store one time. Did I go up to him and probe him to find out if it was a war wound or a farming accident….NO! There are tons of elderly people with oxygen and no one standing around trying to figure out whats wrong with them…

The point is….we came to a store to shop! Or, we came to a restaurant to eat! Not really to meet new friends or have people feel sorry or pity us. So, whats the best thing to do? If you see a person in a store with a child with oxygen, in a wheelchair or a child that is just different (for example, many of the kids on the spectrum look completely normal. You can’t see their disability. Yet, when they freak out in a store due to over-stimulation or something setting them off….people judge them for bad parenting)….the best thing to do is just let them shop. If you feel so inclined, say a (silent) prayer for that family.  If you really feel the need to say something, applaud the mom or dad and just tell them they’re doing a great job.  If they’ve ever heard that they are doing a good job before, most likely….they don’t believe it. Special needs parents spend enough time going over medical history at the bazillion (yes, bazillion is a number…ask our bazillion doctors!) doctors appointments we go to each year. The last thing we want to do is explain it to a stranger. Raising a special needs child is not easy. It has its difficulties…but certainly has its blessings.

Time to get off my soapbox!

xoxo,

Stacie 🙂

I did it…..

I finally jumped in and started a blog! I’m really excited about it. I remember back in the days after Noelle was born, it was absolutely therapeutic to write out everything I felt on her carepage! Here is a link to her Care Page from way back in the day if you’re interested:

http://www.carepages.com/carepages/Mikels

I had ended the care page and started a blog about our family but never kept up with it. Not to mention, we always had 1000 things going on, so by the time I updated it…I didn’t know where to start. I’m excited about including a lot of things into this blog!! I’m a special needs momma on a mission, weight loss success story, practically a nurse (of course no degree….but seriously, Noelle could be my diploma!), Facebook and Pinterest lover who is always looking for ways to organize better and create more time in my life. So, I think this blog will be a culmination of all of that! 🙂

So, if you have any tips on blogging….please let me know with a comment! I’m definitely inexperienced…but willing to learn!

Today, is Noelle’s annual IEP meeting. It is so hard to believe that we will be planning for KINDERGARTEN! I’m not sure where the time has gone…but I want it back. Any parent would probably say that time flies with your children. But it feels like time has flown especially fast with Noelle’s fast paced life.

I remember when she was 6 days old and sitting by her isolette just praying to get a glimpse of her 5th birthday in a dream or something. She was getting ready to have heart surgery and wasn’t even 2 pounds yet! I was terrified and wished that I could trade places with her. It’s hard enough having to watch a kid get ready for heart surgery….but watching your 1lb 11oz kid get ready for heart surgery was devastating. Would the doctor operate with toothpicks? How could she possibly survive this? I just wanted to know that she would make it, I just wanted to know that her 5th birthday would be around the corner somewhere, I wanted to make sure she didn’t feel alone during surgery. I prayed and prayed and prayed … then was reminded. God was going to be with my baby girl during surgery. She wouldn’t be alone. I left her right before surgery, wiped my tears and knew it would be okay.

And it was…

Here we are about 6 months from her 5th birthday! I know what her birthday will look like. I wish I could go back in time and give myself a hug that day and say, “Buck up Stacie…this is just the beginning! Stay strong!”

Have a great day! Thanks for checking out my new blog!

 

xoxo,

 

Stacie 🙂