Awesome News!!

My computer crashed a few days ago...so I've been limping along and luckily (somehow) got the internet on my ancient desktop. Anyways, I have some awesome news about Ms. Noelle!! PT came on Wednesday for a regular visit. She said that Noelle is doing so well with standing...that she will be (hopefully) standing on her own and potentially taking steps in the next few months. YAY!!! However, her standing up now is a little scary because she hyperextends both of her knees and rolls her ankles. I'm guessing this is due to lack of strength and lack of support. So, on Friday, I took her to get fitted for her new orthodic shoes and leg braces. The lady that fitted Noelle said she had never met a mother so excited about leg braces and shoes. I was thrilled! I was unsure if Noelle would ever walk...so the thought of getting her something to help keep her steady and support her ankles and knees made me giddy!

Noelle will still have some challenges...the fitting lady told me that one foot is 1 1/2 sizes smaller than the other, one foot is longer than the other, but they were able to order a "toe lift" to help keep her toes in line. Due to her feet always being taped to keep the pulse ox on...her middle toes cross each other. Apparently, we have taped too tight. Oh well...back then it was much more imporant to get good readings! The lady also said that later down the line, we will have to address the legs turning out. They want her doctor to see if he can figure out if the rotation is coming from the legs or the hips.

The shoes and braces will come in 10 days and I am so excited! I'm hoping that this will make a huge difference and that she'll be on her feet before her birthday! I'm hoping and praying...what a miracle she continues to be!! We are so thankful and so blessed!!

I have been watching the Duggar family on the TLC channel lately. They had their 19th child at 25 weeks gestation. Although, I think they are partially crazy for having that many children...I totally stand behind them. The NICU journey simply sucks and no one should have to go through it. I have a hard time watching the babies oxygen saturations drop and the mom just praying. It brings back a lot of memories. Its time to face these memories and move on. I had a tendency to block out everything just to cope with the craziness of so many things happening at once. I knew one day I would have to deal with my feelings about Noelle's time in the NICU. So, it has been a great outlet to watch this show and know exactly how they feel. The first few episodes...I just cried. I'm doing better now and actually look forward to the new episodes. I think more time will heal me....on a good note...I'm actually looking forward to her birthday this year! Last year, all I kept thinking about was how scared I was on the day she was born and what a critical situation Noelle and I were both in. It was not one of my better days. This year...we are going to party it up!!! :) I'm already starting to plan!!! Her birthday falls on a Saturday and everyone is invited (6/26/2010...details to come in the spring)!!!


So, thats all from our house this week! By the way, of course, I was able to pick out pink and white shoes!! They are actually pretty cute! Keep up the prayers for Noelle and all the preemie babies fighting in the NICU!! As always, please consider donating to team GoNoelleGo!!

xoxo,


Stacie :)

It's been a while....

It's been a while since my last post. As always, it's been busy around here! I'm happy to report that Noelle is doing AMAZING with her stander!! I can even periodically "let go" of her and she'll stand on her own. Of course, holding onto the stander. She is getting really strong and I can't wait to share this new news with the PT. :) :) She's growing up soooo quickly! Andon had an awesome week last week and even got to have a play date at Sport Bounce. We both had a blast!!!

Last week I attended the March for Babies Kickoff Breakfast. I gave a small speech about our story and why the March of Dimes is so important to us. I think I did well...I was actually slightly nervous and that took me off guard. Here is a copy of my speech

"Hi, my name is Stacie Mikels. In 2006, I had the perfect pregnancy, the easiest delivery and a beautiful baby boy we named Andon. In 2007, I found out I
was expecting my second child. My husband and I were so excited and expected my pregnancy and delivery to be very similar to my first child. I have
never been so wrong.

My daughter, Noelle was born on June 26th, 2008 at 24 weeks gestation. She weighed 1 lb 11oz and was only 12 inches long. Many people told me she was the size of a king sized Snickers bar. My delivery was such an emergency, I was put under general anethesia. Because of that and other pregnancy related complications, I was not able to see Noelle until the next day. When I finally got to see her, she was under lights that seemed to be coming from heaven, she was tiny and had tubes and wires everywhere. I thought she was the only baby in the room. I had no idea what a Neonatal Intensive Care Unit was or what they did. I just knew my baby was tiny, sick and too fragile. Never in a million years did I imagine a baby
that small being able to sustain life outside a hospital. My husband and I hoped for the best but prepared for the worst. After 6 ½ weeks, I got to hold
Noelle for the first time. I have never been so excited and so scared in my life! I held Noelle for 3 incredible hours. In those hours, Noelle’s numbers were
the best they had been. The next day, she came off the ventilator! For the first time, I felt like I had done something great for my child.

The NICU was now our extended family that we would always be in debt to. The March of Dimes Program at the Fairfax NICU was invaluable. They provided tons of
education, support and even scrap booking classes. The March of Dimes even had Santa come in during the holidays. My daughter was in the hospital for
Christmas…yet Santa still found her! I got a note at her bedside with the picture that said “Santa knows where to find all precious babies.”

After 222 days in the NICU, 2 surgeries, 19 blood transfusions and countless procedures, Noelle came home on February 2nd, 2009. It hasn’t been easy and there have definitely been bumps in the road. However, Noelle is now a happy 19 month old. She is still on oxygen, a feeding tube and is developmentally delayed.
Nonetheless, she is the smartest, happiest, sassy toddler who has come an unbelievably long way!

I am so thankful for the March of Dimes and the support they provided my family while Noelle was in the NICU. I hope that you will all join my family and I
as we walk at March for Babies this year. Thank you all for your support!"


It was fun to share our story and a few people even told me they had tears in their eyes from my story.

Late last week, Noelle went in for her hearing test. Luckily, the doctor confirmed that Noelle can hear...YAY!! I think we all knew that...just needed a confirmation and it was requested by the neurologist. I said it before and I'll say it again....selective hearing runs in our family. She has really picked up on that trait and choses when to listen. Shocking!

In the past two weeks, I have been really busy starting up my own company! I named it Everyday Miracles, LLC. I am now a Service Facilitator for the EDCD Waiver, which is the waiver Noelle is on. For those of you that don't know a whole lot about the waiver program...it is awesome because it provides parents with help throughout the day/week in the form of attendants. It helped me a lot when I was still working outside of the home and I never would have been able to return to work without the waiver. It makes it so parents can get extra hands to help do basic care needs for disabled children or elderly. It is an amazing program and I'm so excited to be able to help families in tough situations and get them the help they need. Waivers also allow people to qualify for Medicaid without financial regulations.

In the coming months, I hope to be able to expand Everyday Miracles to help with other waivers and community support. It is exciting to be working from home!! It really makes me feel like I'm contributing to my family again. I've never been one to sit around and am really enjoying being a new stay at home mom....so this is the best of both worlds!! I can basically decide how much I want to work and go from there!

The March for Babies is coming up incredibly soon. Unfortunately, we are no where near our goal for Team Go Noelle! Please, please, please donate to our team or find someone who can! I hate to beg...but I'm begging! It's a great cause...I promise!! :) :) Even $10 would make a huge difference. Donate what you can...I appreciate anything you can give!! :) :)

Noelle's neurology appointment is coming up next week...we'll see what this appointment brings!! Say a little prayer! Thanks for all the support and prayers!!

xoxo,


Stacie :)

Winter Wonderland!

It's been a little crazy around here lately. On Friday and Saturday, we got about 31.5 inches of snow. On Tuesday and Wednesday, we got another 6-7 inches. It's been craziness. We have learned a lot about how to handle winter with a kiddo that needs electricity to stay at home. We bought a generator shortly after Noelle came home the second time from the hospital. We are so thankful that we made that decision. Our power went off and on many times during these two storms. It was scary to say the least. The first time it went off, we were buried under about 20 inches of snow and our road had not been plowed. We had enough gas to last the generator about 30-40hours. It was scary to think that if something happened to the generator, we would have to bail on our house and walk down the mountain to get help. We only have 3 oxygen tanks now because we have the machine that fills them up. However, we were not sure if the generator would hold with the oxygen concentrator and the tank filler machine. Thats a lot of power needed. It was scary to say the least and I think we will prepare a little bit more...just incase we get ourselves into a situation where we can't leave the house but have lost power.

Last night, we lost power for a little while and Noelle's oxygen saturation levels started to drop. I checked all of the tubing and connections and could not figure out what was going on. I changed her cannula hoping that it was twisted in the back and kinking. Still didn't work. About a half hour after the desatting started...I finally realized the sensor on her toe was slipping off (it happens with sweaty toes)...I could not believe I didn't notice that!!! Ugh...

Otherwise, everyone has enjoyed being at home together. Whatever routine we had....is now gone. Daddy and Andon did a great job shoveling some of our driveway. It proved to be WAY too much snow, so we finally called a neighbor and he brought over his 4 wheeler with a snowplow. It took him about 2 hours to plow our driveway and he got stuck several times. We were so thankful that he came over to help us out. It saved our backs big time and was a HUGE sense of relief! :)

Noelle has really been enjoying her "stander." She can now put more weight on her legs. She does tire quickly, but I'm sure thats expected until she gets a little stronger. She is scooting around like crazy and is getting quite fast. She has become a little trouble maker. Imagine that?! She pulls the dogs legs, harrases her brother, pulls off her cannula, laughs when we try to discipline her, and in general does whatever we tell her not to!! She's crazy!! I love it though. I remember when she was in the NICU, I was not sure if she would make it this far... so...I'm glad she is getting into trouble...I love it!

Daddy left for work this morning and I made some homemade playdough with the kids. Noelle hated it...but Andon LOVES it. He may play with playdough all day. Once I put the playdough in a baggie....Noelle finally played with it. I'm going to have to tear him away from it to eat lunch!! haha!! He's been a really good boy during all of this snow craziness. He has been a big helper...but hates when the power goes out.

Thats all for now!! Above are our snow pictures from this past weekend. :) :)

xoxo,

Stacie :)

Good reports all around....

Noelle had several doctors appointments this week and so far so good. The GI doctor was happy that she was gradually improving. The only problem now is how to get rid of the gagging/retching episodes. There are probably 2 more things we are going to try. After that though, she is either going to have to live with it OR get a JG-Tube...in which she would need to bed fed 24/7. I think if the next two options don't work...she is just going to have to live with it.

The pulmonologist went really well today as well. He is super impressed with her oxygen saturation levels...she is now typically on about 1 liter (low flow) during the day and then goes back on high flow oxygen during the night. She is still OFF of the steroids!!! She looks like a rockstar. Since they have come down on the calories per ounce of her formula...she has actually lost about 6 oz since being discharged from the hospital. But...is still doing fine. They are actually hoping to thin her out considerably in the spring so we can really focus on getting her to eat by mouth during the late spring and summer. They all felt it was a much better idea to keep her "plump" during the winter months. :) I wish someone was forcing me to stay plump!!

Physical Therapy came today and brought Noelle a "Stander," which looks like a walker but a mini version. It's really cute and I can't wait for her to get on her feet. Right now, she can stand at the walker with lots of support to keep her upright. She is practicing holding herself up with her arms on the handles...but it'll be several more weeks/months before she is completely able to do that on her own. The pictures above were from Noelle's first time using it and how Andon was acting during it. Of course, Andon was so excited about it and says he is just showing Noelle how to use it. He has walked all over the house with it.

Andon has been really doing well getting into a better routine with me. We are suppose to get a TON of snow this weekend and Andon is super excited! Noelle...not so excited...she hates the snow. Ross and I are really preparing for this snow. It used to be no big deal if we had a big snow. But...we have to make sure we have enough gas to run the generator for a few days if our power goes out so Noelle can get oxygen. We only have 3 tanks that we can refill with our machine. So, we want to make sure we are prepared just in case. It would be terrible for our power to go out and not be able to give her oxygen...that would land us in a really bad situation. We are just filling up the gas tanks and hoping our power stays on.

I'm giving a speech next week at the March of Dimes-March for Babies kickoff breakfast. I've written the speech out and am hoping I do a good job!! :) I'm excited to share our story...people need to understand that prematurity happens to regular people just like me and you. Happy (almost) Friday!!


xoxo,


Stacie :)


PS...I almost forgot. This past Tuesday (Feb. 2nd) we celebrated Noelle's one year NICU Anniversary. It has been a whole year since she came home! It was a big deal!!