Repeat after me...change is GOOD!

We have had a few crazy months in the Mikels house filled with change, great news and not so great news! Let me warn you...this is going to be a long post. Grab a drink and a snack and then come back and read!

First off, I'm just going to come out with our biggest news. It is something that Ross and I have fought for a while now but have given into and it's a great feeling. Ross and I filed for Bankruptcy this month. Repeat after me...change is good! We are not proud about this...but have realized it is for the best. We have so much medical debt from Noelle being born early to my medical bills from when she was born. Of course, I had co-insurance...so I owed a considerable amount of my Emergency C-Section, emergency transport to Fairfax, emergency blood transfusions...I could go on for a while about the things we owed. I was forced to quit my job after she was born. We went from a pretty comfortable two income household to a strapped one income household. We were putting our basic bills on credit cards just to keep our home a stable place for our son who thought the whole world turned upside-down in 2008 AND 2009. Then, when I was forced yet again to quit my job in December of last year because Medicaid was threatening us...we hoped that we could make it work. We couldn't. Please don't misunderstand. We don't want pity, we don't want people to feel sorry for us...we are finally on a clean slate again and it feels great! You know me...I always have to find the silver lining.

Repeat after me...Change is good! So, next month...we are moving! We were so blessed to find a man who was willing to overlook our financial history and look at our story. He is going to rent us his single family home!! We know we are not irresponsible people or parents...and he totally takes our word. We were totally upfront and honest with him about what happened and he is happy to help out. I think he's also happy to take his house off the market and know that people are going to take care of it. We are excited. Andon and I went over to our "new house" and he was able to pick out his new room. Now, he wants a bunk bed to fit in his new room. I'm going to have to work on that one! It's time for a change...2011 is truly going to be a new start for us! Clean slate financially and a new house to move into. I'm excited about reorganizing and having less space to clean! :)

Little did we know that 2 days before filing for bankruptcy that Ross would get into a car accident. Ross was fine. He walked away without a scratch. THANK GOD! But our vehicles were the two things we were going to keep. To make a long story short, his truck was totaled. We owed more than it was worth...so we were down to one car. This was a rough day for us...but at least we still had my car. Luckily, Ross still had the rental car from his accident.

A week later, I was volunteering at the hospital and my car broke down as I was pulling into the parking garage. That night, as I'm driving my moms car back home...I had a stern chat with God. For crying out loud...we have been through enough. I wasn't selling crack on the corner...I was getting ready to volunteer my time at the hospital where my daughter lived for almost a year! I asked...no...I begged, for some kind of hope that things would get better. Call me crazy....just then....I saw a shooting star. I knew things would work out somehow. It was then I reminded myself that there are always situations worse than ours. We still had a roof over our heads, and for the most part...my family was healthy. There are thousands of kids in hospitals right now with families struggling. I should't ask for more...

The mechanic called and told me my transmission was shot. My poor car has almost 200k miles on it. We thought long and hard about what to do. At one point, the mechanic told us that it probably wasn't worth fixing. I said a prayer with my mother in law. That afternoon, the mechanic called back and said that the transmission wasn't bad...the computer inside was. YES! It was still a lot of money to fix....but worth keeping the car now! :) I joked with Ross that night...we were almost homeless and car-less....I don't think he thought it was funny! ;)

We were still trying to figure out how Ross would get to work everyday. I was uncomfortable with being at home with Noelle without a car. There are many days that I have had to run up to Fairfax spur of the moment because of her lungs and breathing. Out here, we can't really rely on 911. They would take her to the nearest hospital...and if it was a true emergency...they would take her down to UVA before Fairfax. One word describes that....EW! Ross is so blessed that his company gave him a company truck just until we can buy a new vehicle for him (we've been told about 3 months). THANK GOD...yet again!

Andon is doing great about all these changes. He is excited to move into the new house. Although, I can tell it stresses him out a little...he acts like he's excited! He has decided that he wants to play T-Ball or Football in the spring instead of Soccer. He is going to school full days now which he really enjoys! I can't get over the fact that my baby is going to Kindergarten in the fall. Time flies way too fast. Every time I blog, I wish I had more to say about him. I never want him to feel slighted...however, he is so healthy and so happy....it's a blessing that I don't have much to say about him!! He's just such a great kid!

Noelle has been hanging in there. Her lungs have already taken a bit of a hit this fall and winter. In part, because she goes to school and is exposed to many more germs than she can handle. School is WORTH IT! Noey has enjoyed school so much. After watching your kid in the hospital for months at a time and watch her almost die....watching her enjoy school is so nice! She is so excited on school mornings! However, she has been sick a lot! She has had 2 (almost 3) pneumonias. Luckily, she only spent one night in the hospital. High flow O2 has been our friend again recently, especially at night. The pediatrician kind of freaked me out a little at our last visit. He is the second medical professional to inform me that she might be "growing out of her lungs." I don't even know what this phrase means....but I think its crap. I keep meaning to ask the pulmonologist about it...but missed our last appointment due to the snow. Her lungs for the most part are the same or worse. No one really knows why her lungs are not improving. It's a mystery!

The great news is...Noelle is pretty much WALKING! She is so proud of herself! I'm so proud of her! She has come such a long way. To all the people that doubted her ability and strength....HAHA! She is stronger than most people I know! She gets really winded and sweaty when she walks...but she has determination like no other!

In other Noelle news, it looks like Noelle may qualify for the VA Neurological Birth Injury Fund. This is a fund that will provide lifetime support for Noelle and whatever her needs are. I'm not sure about the full scope of what is covered...but I've heard from other parents that it is a miracle! I didn't think that she would qualify at all because all of her head ultrasounds came back normal while she was in the NICU. Not to mention, all of her issues seem to stem from prematurity....not a birth injury. Fairfax had reported that her ultrasounds were all normal, showing no brain injuries and/or brain bleeds. I got in touch with this lawyer (who the birth fund pays to get children into the program...I won't have to pay her) who requested all of Noelle's records, including the head ultrasounds. She sent the ultrasounds to some expert radiologist. He came back and said that Noelle's head ultrasounds were abnormal from the start showing signs of significant oxygen deprivation starting from the first ultrasound on her birthday and getting progressively worse after. This proves that there was a birth injury from the abruption....therefore qualifying her for the program. I couldn't decide if I was excited to get into the program or upset because I finally proved my theory that something neurological was "off." I have been going back and forth with the neurologists....telling them that something was off. Whether it was seizures or tics...or something. No one ever believed me. I'm taking her to a new neurologist in January...and I'm bringing this up. All in all, this is good news and should provide us with relief.

We are super excited about the holidays around here! Even Noey seems to feel the excitement! Andon's school is doing a little concert during church on Sunday... and he is really excited to dress up for it!

I think that is enough news from us for right now! I'm sure there are spelling mistakes and bad grammer...but I'm tired and better get my butt to bed.

Merry Christmas and Happy New Year to anyone on here that still reads my updates! May your holiday be filled with joy and warmth of family and friends. :)

xoxo,

Stacie :)

Spook-Tacular October!

The Mikels family has had a fantastic October so far!!! On October 3rd, we left for the beach for the week and had the best time a family could possibly have! We got to stay in a nice, big house (with an elevator...mind you!) and just had some really great family time. Many days, we get lost in the craziness of life, doctors appointments, school, etc... It was so nice to go away and just be able to enjoy each other!

If you have never been to the Outer Banks...leave NOW! It is a magical place! Our kids enjoyed waking us up to enjoy the sunsets together over breakfast. The beach was an everyday occurrence and Noelle really enjoyed napping on the beach. While it wasn't warm enough to go in the water everyday...it was still so enjoyable. Not cold yet not hot! Absolutely perfect! Andon enjoyed sandcastles and collecting sea shells. Noelle enjoyed watching the kite. Noelle refused to play in the sand until the last day. She must have known we were leaving because she not only played in the sand...but then completely immersed herself in sand while playing in it! It was so much fun to watch. Ross really enjoyed the surf and sound fishing and actually caught a lot! One of my favorite parts was being able to watch one of my high school girlfriends walk down the isle (in front of the sound sunset!) to one of my guy high school friends. It was like a mini reunion and was so much fun! We can't wait to go back to the beach sometime soon...hopefully!

In other Noey news, her eye doctor appointment went GREAT! Her eyes are looking fantastic and she doesn't have to follow up for another year! SCORE!

I took her for another opinion with a different Neurologist. As soon as he found out we were there for a second opinion, he shut down. He examined her and basically told me that he didn't need to see her anymore and that he agreed with the neurologist at Children's. Whatever. I'm taking her to see a different Neurologist at Children's in January. I want to be comfortable with my choices for her care...and I'm not comfortable with a doctor that doesn't even lay a hand on her during a neuro consult. He's a wack job and I'm not going back there. We'll see what happens with this new doc at Children's. I've received several opinions from different people and everyone agrees that something is off with her neurologically. Its not major...but something is just off. I'm going with my gut...

Her chest cat scan came back as expected. Dr. Fields said "her lungs just suck!" Well, nothing new there! We talked a lot at the last appointment about what life is going to be like for a while. Unfortunately, the lungs do the most amount of growing between birth and 2 years old. Now, that she is over 2 years....they will still grow but at a slower more steady rate until she is 18. So, we are probably looking at a long term oxygen solution, if not forever. I guess it doesn't really matter that much...we are so used to it by now. It would just be nice to one day be tube free. It's a great dream and something to pray about...

Andon had his first field trip of the school year to Cox Farms (the local mega pumpkin patch). I was able to volunteer...finally! I have to admit, after all the field trips I went on as a summer camp counselor and then as an administrator...this was WAY more fun! I love going on field trips with no responsibility other than my own kid!! We had a blast. It was a perfect weather day and we had some great kids and teachers with us. We brought home some pumpkins and tons of great memories!

So, I don't usually do news about me...but I'm pretty excited about this news. I have made the decision to go back to school to get my nursing degree. I'm sure most of my extended family thinks I'm crazy...but I'm really excited about it. Plus, I think it will give me some forced "away and me" time. I have a lot to learn...but I have a ton to gain. So, why not?! I'm going to start off very slow and just do one class a semester for a while. I have to get a few pre-requisites before I can apply for a nursing program. So, that'll take me a little while. Plus, financial aid is harder to come by when you are getting a second Bachelors....so I'm going to have to go slow and (somehow) pay out of pocket. If anyone knows about any great scholarships...please let me know!

Halloween is coming!! Andon has decided to be Superman and Noelle will be Dorothy from the Wizard of Oz (Because there is no place like home...)

Hope everyone has a wonderful rest of October and I'm going to try to update more often so the posts are not so long!

xoxo,

Stacie :)

YAY for Fall!

I've probably opened this page and started a post about 5 times this week. There is so much to update everyone on.

First of all, I went ahead and signed off on Noelle's IEP within the county and she started special education preschool on 9/14. She goes Tuesdays and Thursdays from 8:30am-11:30am. The lead teacher in her class has TONS of experience and a Masters Degree. There is also a Speech Therapist in the classroom each day as well to work with the kids. On top of that, they have an aid and a volunteer. That is 4 adults in the classroom each day. The best part....there are only 3 children...including Noelle. What an AWESOME teacher/child ratio. I could not be more excited and the best part is...she LOVES it. Unfortunately, we did have to give up her home services with Early Intervention. It was one or the other. That was really disappointing because we really loved her home therapists and case worker. Luckily, we found a few of her therapists on Facebook so we are able to keep in touch.

The bad part about her going to school is, after 2 days attending...she was sick. I think she just had a small cold, but of course with Noelle the sky was practically falling. The poor girl couldn't breathe and had to go back on high flow oxygen for several days. A few days of steroids, a few frantic calls to the pulmonologist, an almost ER visit, a little bit of rest and sharing the cold with her brother has made her better and ready to go back to school tomorrow. Andon was able to go back today even though he was a day or so behind Noelle in getting the cold. I'm sure this is going to become a reality with Noelle and Andon both being in school. At least they share one thing...germs.

Noelle finally had her wheelchair delivered today!! It was so exciting! At first, she was very upset by being put in the chair...but when she realized that she could wheel around, she was sooo excited. We did find out that our house is slightly slanted and hard for a toddler to wheel around in. She's going to have so much fun wheeling around school with it!!

Medically for Noelle, we have several appointments coming up. About two weeks ago, Noelle choked on her dinner. It was so bad, I had to flip her upside down and smack her back to get the food out. I finally got her breathing again and set her back in her high chair. I turned around to rinse the chewed up food off my hands and when I turned back around...she was in what appeared to be a full blown seizure. She was shaking and convulsing and her eyes had rolled up in her head. I freaked out and tried to get her out of it...to no avail. She finally came out of it on her own. This episode lasted about 15-20 seconds. I called the pediatrician to see what we should do. After all, she just had a 24 hour EEG which was normal. The pediatrician said to put in a call to the neurologist and come in to the pediatricians office to just make sure she didn't aspirate her food from choking. I called the neurologist (who is not one of my favorite people) and the nurse called me back and said she believed she had a "holding breath episode" and she would be fine. The doc didn't want to see her...nothing! I was put off by this. We have been suspecting silent seizures for over a year and now she has had a full blown shaking seizure and nothing! The neurologist booked an appointment to follow up for January. I, personally, did not find this acceptable. So, I'm taking her to get a second opinion at a different pediatric neurologist on Wednesday. Thursday we see the pulmonologist again for a regular check up and to get results from the CT scan. Friday, we see the Eye Doctor for the first time in a year! I'm anxious about this one. Noelle has recently started to read books very close to her face and insists on getting about 2 inches from the television. We always knew she would probably have glasses...it might be the time.

We did get the results back from her sleep study. She does have mild sleep apnea and basically the pediatric version of Restless Leg Syndrome. They are going to check her levels of iron and hopefully treat with iron. The apnea is not enough to require anything additional. On average, she moved her legs 77 times per hour during sleep. Which apparently is crazy. This could be the reason for her extreme tiredness...her legs probably wake her up at night. The sleep study doc also said that there is some sort of correlation with the restless leg syndrome and developing ADHD. I wasn't surprised about that one either. Seriously, nothing to worry about today at least! Remind me about it before she starts kindergarten! :)

Andon started soccer last weekend and was so excited to see his friends again. Ross is the assistant coach and I think it helps Andon to stay on the field. Compared to his first soccer game last year....this year was no comparison. He knew exactly what to expect and ran out on the field. He has been trying a lot more this season as well. He actually chases the ball rather than just watching the ball! :)

Andon is really enjoying his school. He moved to a new classroom for kids that start Kindergarten in the fall of 2011. They even have little desks to do academic work. We are really lucky to have found this school. The school has led us back to church as well. After Noelle came home, we were told no group gatherings at all...including church. So, we figured if she can go to school now...she can go to church with us. Our new church is fantastic. I have felt so welcome each and every week we go. In addition, have really enjoyed the service. The church I grew up in was very traditional (and boring!) This church is not either. There is a live band, great music and great sermons each week. It is really something we are excited about. Ross and I always knew we wanted to raise our kids in a church and we have never really found the right one. I am excited to say...I think we have!

We leave for the beach next Sunday! Ross, Andon and I could not be more excited!! Noelle doesn't know what is going on...yet! We cannot wait to just be together and relax. I'm not sure we know what that is anymore. Between Ross working, me starting my own business, doctors appointments, therapies, and shuttling the kids back and forth to school...its crazy!

I know I am terribly behind on pictures of the kiddos...but I'll catch up after the beach! Or maybe at the beach...I'll actually have time! Hope everyone is enjoying September!!

xoxo,

Stacie :)

End of Summer

As the summer comes to an end, the Mikels family is doing pretty well. We have finally had some days of less heat and humidity so that Noelle could actually enjoy going outside. Andon is excited to get back to the grind in his Pre-Kindergarten class. I'm finally ready for some cooler weather and fall is one of my favorite seasons! Unfortunately, it doesn't look like Noelle will be attending the Special Needs preschool in our area. In order to keep all of her home therapies, we have to deny her IEP. If we transitioned her to the school system, we would loose our homebound services through Early Intervention. However, the school system told me that it was not a possibility to go to school in the fall and spring, but have homeschooling in the winter...even with a doctors note. I think I want to keep her home one more winter and hopefully have her gain more strength. I think if I kept her at school through the winter, we'd be visiting hotel INOVA way too often. As much as I love the people there....I'd rather have her healthy at home. Her final IEP meeting is coming up...so we'll see what happens.

Otherwise, she's doing pretty well. Still having some lung issues...but what else is new? Her 24 hour EEG was NORMAL!! YAY! I think there is still some question about what causes her staring spells and ticks...but the neurologist said that he wasn't concerned and we don't have to see him for 6 months. Thank goodness because that doctor has the personality of a rock!

The pulmonologist is still trying to figure out whats going on with her lungs. Obviously, they are fragile. Obviously, she's not coming off oxygen for a while. Obviously, her extended ventilator use has really hurt her lungs and it's going to take an extra long time, if and when it heals. Noelle is scheduled for a sleep study to see how she breathes at night on September 1st. She is also scheduled for a CT of her lungs on September 1st as well. The idea with the sleep study is to figure out if she breathes well while sleeping. We know she is able to keep her sats up at night (because she's monitored with a pulse oximeter when I don't have eyes on her)...but maybe she is slowing her breathing or having apnea spells. The point of the CT of her chest is to figure out her lung volume and to check for blebs. Maybe her lungs are relatively small and are not growing with her? She has grown taller...however, she is sooo skinny.

Her respiratory status is really up and down. Some days, she does great and only needs 2 nebulizer treatments each day. She doesn't work hard to breathe and we don't hear a whole lot of wheezing. Some days are the opposite. She needs nebs every 4-6 hours, she working hard and wheezing. On most days, Noelle sleeps about 12-14 hours each night with a 2-3 hour nap during the day. I'm pretty sure thats excessive for a 2 year old.

On to the good news, Noelle is officially an eater! We have cancelled the feeding clinic do to the fact that she is eating everything. She eats about 300-600 calories per day. Anything from spaghetti, pizza, crackers, sausage, yogurt...you name it...she'll try it. If her brother is eating it...she'll eat it. She has turned a huge corner in the eating department. Not entirely a well balanced meal everyday...but huge improvements. Hopefully, this is in the right direction to start minimizing the tube use. The plan is to keep her tube feedings the same and feed her by mouth several times per day. The hope is that she'll pick up some extra weight for the winter/germy months...then if all goes well...start weaning the tube feedings in the spring. Unfortnately, I think she burns just as many calories as she takes in just by eating the food, chewing and swallowing. It's hard work!

Her wheelchair is ALMOST done. We are expecting a delivery at some point next week. I'm most excited about this. Her new braces that go all the way up to her hips are not making her day....and are actually inhibiting her movement. So, I think we are going to get those fixed again.

I think those are the updates for now. We have really been grateful lately for Noelle's journey. Although there have been some really rough times, she's still here. There are other parents that don't get that opportunity. Being a special needs mom (and a normal plain old mom) is priceless. I wouldn't change this experience for the world. I'm appreciative for each and every day I get with my kiddos. I can't take a day for granted. I hope you don't either....


xoxo,

Stacie :)

Happy Summer!

It's been many months since I have posted on our blog. Combination of being extremely busy and a combination of wanting to block certain things out :) .

There has been lots going on since May when I was last on here. Both kids had birthdays (Andon had an awesome birthday party at school for his forth and we celebrated at home for Noelle's 2nd birthday) and they both seem to be growing up so quickly right before our eyes.

I'll do Andon's update first because he is essentially the quick one! :) We enrolled Andon in Dynamic Life Christian School 3 days per week for the half day program and he is LOVING IT! He loves school days and is loving the field trips right now! He graduated from the preschool program and will join the Pre-K Classroom in the fall. He is so excited. This school is awesome!! They have an indoor play area with a moonbounce as well as a game room with skeeball, air hockey, ping pong tables and old style pac-man! Not to mention the great woman (and a few men) that run the school. It is a very good atmosphere for him to be in. I took Andon for his 4 year old check up and he is a very healthy boy and still running very tall on the scale! Poor kiddo had to get 3 shots and thought it was the end of the world...but he was super brave and actually did pretty well. We enrolled him in Soccer for the fall with the same team he was on! He is very excited to be playing soccer with his friends again!! For Andon's forth birthday he got some new Thomas Trains (shocker) and we took him to a Nats game (10 rows from the field) where the giveaway was a cute Nats kids backpack! YAY!It was hot but he still talks about it. Ironically enough, he doesn't really talk about the game but how cool it was to ride the Metro! haha!


Noelle on the other hand, probably has the longest update of all of us. It is still quite the roller coaster with this girl. She ended up having surgery at UVA on June 4th. The surgery was done successfully which is very exciting but UVA left such a bad taste in my mouth, I don't think you could pay me to go back to that place. I really think that if you get used to a certain health system...then you should do your best to stick with that system. Noelle was a planned PICU (Pediatric Intensive Care Unit) admission after surgery....yet they didn't have half of her medications or formula. It's not like they didn't know about it. Everything was in the Pre-Op report. The PICU nurse tried to put her ear drops in her eyes....thank God I was in the room to stop her and make her go back and check the chart! It was an overall disaster and I was really disappointed that such a top rated hospital sucked so badly! Never again...

For Noelle's 2nd birthday, we ordered her a ton of DVD's of a program called "Signing Time." The speech therapist and her doctors think the lack of verbal skills could be due to mixture of poor motor planning and poor breath support. There are no answers to when she might start speaking...so we are just going forward with the sign language. Noelle loves it and is really getting good at communicating with us. So, Andon and myself are getting pretty good at figuring out what shes saying. We all have Signing Time scheduled into our day to practice and learn some more signs.

We are so blessed to have VA Medicaid. For people that reach the lifetime maximum so quickly....Medicaid has been a miracle. They now pay for diapers for Noelle (which is a huge help) and we recently ordered some new items for Noelle. It's time for new braces and shoes. She is outgrowing the old ones. But in addition, her left foot seems to still externally over-rotate. So, they are taking the braces up to her hips to hopefully correct the issue. Noelle is able to pull herself up to stand and enjoys standing supported. However, still not taking steps or even attempting to let go. She has recently started to cruise the couch and go side-to side and this is pretty huge. Unfortunately, the problem with walking is that her gait is so unsteady (especially with the one foot turned out so badly) and her respiratory status may not have her up and walking anytime soon...so we went ahead and ordered her first wheelchair! We have spent the last year tearing up strollers with the huge oxygen tanks...so it was time to get something more durable and easy for Noelle to get around in. We went on Thursday to see if she would be able to maneuver a similar chair around the store before we ordered hers. It was a HUGE success. The salesman showed her how to move the wheels and she was off!!! She wheeled around that store for over 30 minutes and LOVED IT! The only problem with the chair is that her left side has always been the weaker side, so we kept having to correct her steering. The sad part is going to be our walls once she gets this chair home. But who cares....she'll finally have some freedom and be able to keep up with her brother. I'm super excited that she is going to be able to get around on her own. And perfect timing before she goes to school....

Thats right, Noelle will be enrolled in Special Education Preschool starting in the fall two days per week. We got really lucky, because during this time...she will be able to keep her home services (PT/OT/Speech). Then, during the winter months, she'll stay home and go back to school in the spring. When Noelle turns 3 next year, she'll lose all of her home services and go to school full time. That means both my babies will be going to school full time next fall. We just won't talk about that right now...

Developmentally, Noelle is doing fantastic. She is picking up sign language and is really starting to communicate. She is measuring on the level of an 11-12 month old which is a huge leap. She has had a ton of assessments lately due to the IEP process, but everyone loves her smiley and spunky personality. Noelle really knows what she wants and is not afraid to let everyone around her know. She is showing some great 2 year old behaviors, such as hitting, kicking, biting. I remember when Andon did those things I was mortified....however, with Noelle...she's finally doing something AGE APPROPRIATE. That is definitely something to celebrate.

Medically, not so exciting. She recently had blood work and a chest xray because her lungs just don't seem to be getting better like we all had hoped they would by now. Many of her doctors keep asking why she is still on oxygen at age 2....well...because she needs it. I asked the pulmonologist why all of her doctors all of the sudden wanted to know about the oxygen needs. Apparently, between the ages of birth and 2 the lungs do the most amount of growing. They still grow after 2 but not as significantly. So, typically if a kid is going to come off oxygen or come close...it should be before or around their 2nd birthday. Of course....thats the typical kid...not Noelle. She is still on a lot of oxygen. Occasionally, I still put her on high flow at night. She still kind of roller coasters with her respiratory status. I have come to know that she has this specific cough when she needs more flow. So, I'm really starting to wonder if its an issue of flow and not needing the oxygen specifically. Her oxygen saturations are typically wonderful. However, there are many days where she requires more nebs (because she's working too hard to wheezing or doing this weird coughing thing), but not because her sats are low.

It is very odd. Her most recent chest xray showed some increase of the "nasty spots" from her BPD (chronic lung disease). It also showed that the left atrium of her heart was enlarged. The pulmonologist called her cardiologist and they are not too concerned and are choosing not to do anything about it, but will simply "keep an eye on it." Still, the lung disease is far from getting better and is essentially getting worse. This explains the roller coaster respiratory status, but no one has a clue why. I guess, most kids like Noelle are trached. So most of her care, I guess, is basically trial and error. I haven't heard of too many preemies like her that are still on oxygen at age 2...that aren't trached anyway.

Other than all that stuff, we are doing well. Noelle is scheduled for a 24 hour EEG at Children's in DC on August 11th to check for possible seizures. We'll see what that brings. I'm not stressing over it. The seizures are either there or ... not! In September, Noelle and I will be going back down to UVA for a 2 week intensive Feeding Clinic, to try and teach her how to eat. The goal is to significantly decrease the tube feedings and make her more dependent on eating by mouth.

As for me and Ross, we're still here. I find myself frustrated a lot trying to juggle the kids, working, medical issues, insurance remittance (because we still apparently owe Fairfax Hospital over 100k from the NICU stay), doctors appointments and trying to take some care of myself as well. Raising a special needs kid is tough....and the issues seem to never end. I wouldn't change anything though. Our family is our family. God has blessed us with Noelle this way for a reason and we are all thankful!

During this past spring, we booked our first family vacation since Noelle was born and it is getting closer! We are getting super excited and we still don't leave for another 3 months! We will be going down to the Outer Banks for 2 weeks in October. We rented a huge house (with an elevator...thank goodness!) and will be able to enjoy our private pool, hot tub and finally be able to just relax with our family!!! We need a vacation soooooo badly! I could not be more excited! Not to mention, one of my high school friends is getting married down there while we are there! So, we are wishing the summer away! I've heard that OBX is great that time of year and the beaches are practically empty! We can't wait! I'm so sick of strange people just staring at Noelle or "Awwwww'ing" at her. On the Forth of July I was holding Noelle while Andon was on the moonbounce and some strange man had the nerve to ask me to remove my kid-leash from Noelle. I just stared at him and then looked down at the huge tank coming out the the stroller and he finally said "oh...sorry!" Some people are just idiots and don't get it.

Anyways, thats it from here. Sorry it took so long to update. We're still here and all doing well. I'm going to make a better effort to be on here more often and update everyone more frequently. Hope everyone is doing great!

xoxo,

Stacie :)

It's been forever...

Does anyone even read this anymore?? Sorry guys, it's been forever since I posted! Everyone is doing well around here. There have been a few changes and updates to tell everyone about!

First of all, the March for Babies was so much fun in Reston on April 18th! I made a speech at Opening Ceremonies and was able to cut the ribbon to get the walk started. It was a lot of fun! We raised a total of $340.00!! I was no where near my goal....but I'm proud to announce that Aunt Ada was the top Family team down in Florida raising well over $1,000!! I'm so proud that they marched for babies under the name GoNoelleGo!! Thank you, Thank you, Thank you...from the bottom of my heart!

Andon has been doing much better playing soccer lately. He has had a few rough weeks where he doesn't want to play but this weekend he was MUCH improved and seemed to actually have a great time!! YAY...finally!

The case load for my new business is really starting to pick up to the point where I'm actually busy again! :) I really like the fact that I can work when I want and play with my kids when I want! It's so nice to be able to stay home with the kids during the day and generally am out doing home visits about 2 evenings a week and occasionally on weekend. Not bad! The job requires me to do a ton of paperwork and usually I do that after the kids and Ross go to bed...I've always been a bit of a night owl!! :) I love it!!! Everyday Miracles has turned into a miracle for our family!

I guess the biggest news in our house is that Noelle will be having surgery down at UVA on May 21st. Not a major surgery by any means...she will have her adnoids taken out and tubes put in her ears. She has had such a rough time with those ears lately and it has really caused her respiratory status to decline gradually with each infection. She is back on about 2 liters during the day and back on high flow at night. The only thing we can chalk these changes up to is being sick. She just can't handle it. So, the pulmonologist wanted her to have tubes and be evaluated by an ENT as soon as possible. Sadly, there is not ONE ENT doctor that participates with Medicaid and would do the surgery at Fairfax. Our pulmonologist said he would prefer a bigger hospital like Children's or UVA because she will have to be put under General Anethesia. So, we were incredibly lucky and got in with a great doctor down at UVA the next day (when I called they had just had a cancellation for the next day)!!! He went ahead and booked the surgery and wants to take out the adnoids as well. He booked a room for Noelle in UVA's PICU for the night after surgery. Hopefully, she'll spend one night in the hospital and thats it! I'm a bit nervous about going to a new place...but it'll be okay. I hate to put her under again.

Thats about all the news from our house. We are just enjoying the nice weather and getting outside as much as possible. :) :) Hope everyone is having a great day!


xoxo,

Stacie :)

Mikels Miracles are Marching!

Tomorrow is the March for Babies! We are so excited to march as a family tomorrow for Noelle and all babies that deserve a healthy start!! This week has been a little hectic and I haven't been able to get nearly as much done as I was hoping.

It started on Sunday with an ER visit with Noelle. Poor girl had a bad ear infection where she actually perforated her ear drum. In December, her ear infection ended up with a week at Hotel INOVA Fairfax...this time...even with the perforation...we went home after 2 hours in the ER. That should be some kind of Noelle record! :) I was so excited to take her home. I think the big difference is this ear infection came from a cold...where the previous infection came from an Upper Respiratory Infection. Anything that has to do with her lungs....forget about it!

Andon is enjoying his second week of soccer. His team is a lot of fun and has some really fun (and cute) kids on it! He didn't really come out of his shell the first practice...the second practice this morning was much better. He was so proud as we were leaving that he participated and had a blast. The kids slept the whole way home and we stopped to go fishing on the way home as a treat! Andon loved it...Noelle...not so much. It was too windy and was taking her breath away. Oh well...next time!

Tomorrow is a big day...I'm making a speech at the March for Babies in Reston to tell our story about prematurity. I guess it's kind of a big deal! I would call myself anxiously excited. It will be great to get together and walk for a great cause. I wish I had raised more money this year...but it seems like life always gets in the way. I have big plans for next year!! :) :) Wish me luck!

Well, thats all from here!! Busy as always. Even not working...life is still insane most days! Definitely a more fun insane though! Hope everyone is enjoying April...it will be over before we know it!


xoxo,

Stacie :)

Easter Blessings!

Noelle's EEG came and went on Friday. Luckily (and kind of unluckily) Noelle had lost some additional weight and came in under 10kg (she is down to about 20 pounds approx). Therefore, they were able to just put some sleepy medicine in through her gtube. This was great news. I totally wanted to avoid an IV. However, the medicine didn't really work and she pretty much screamed through the whole thing. Hopefully it did not mess up the results. The technician at the end made a comment that hinted toward her having seizures. I guess we'll see. The Neurologist should be calling me back any day now with results.

We also celebrated Ross' 30th birthday last Friday!! Last year, Noelle was admitted on his birthday and needless to say, we didn't do anything special for him. In fact, I think he ended up bringing me lunch and was a shoulder for me to cry on! He is an incredible husband and dad!! I attached a picture of his birthday cake. The "old fart" was his idea and Andon got so excited about it...I just did it! haha!

Otherwise, Andon and Noelle had a fantastic Easter. The Easter Bunny was very good to them.

My poor babies are both sick. Andon started yesterday and Noelle started today. They both have nasty noses, coughs and slight fevers. Nothing too alarming...but of course, Noelle needed extra oxygen support to keep her sats up this evening. We were playing the old "up and down game." Nothing new in our house. I took her back to more frequent nebulizer treatments and turned her oxygen up. Luckily, she is still not on high flow. I have been able to manage her oxygen sats on about 2 liters. If she requires any more throughout the night...I probably go ahead and put her back on high flow and call the doctor in the morning. I am so blessed to be able to handle these things at home with ease. Not every household can just pop their kid on high flow oxygen if they need it. The tricky part is...knowing when to call the doctor. That part stinks. Admission to the hospital is always looming in the background when you talk about Noelle being sick. If I can manage her at home without steroid help....I call myself successful. If she gets worse or is all of the sudden requiring a lot more oxygen...of course I would call.

Andon starts soccer this weekend and he is super excited! I have to admit that Ross and I are really excited too. Having a family activity "all about Andon" is a wonderful change!

Also, big news in our family is that I was asked to speak at the March for Babies coming up next weekend. I accepted...however am somewhat shaking in my boots! I will be speaking in front of about 1,500 people! By far the biggest crowd I've ever spoke in front of. Granted, I MC'ed events in college, spoke and taught at conferences....but this is a little different and its about a very personal experience. But one that people need to hear. We have a great story to tell about our miracle baby. If you all are going to be around on April 18th, come to the March for Babies in Reston and support me and all the preemies. I would appreciate as many people as possible to cheer me on. The more familiar faces...the better!



I wanted to post some recent pictures!! I finally am posting some pictures of her new shoes. They are so cute and she is so proud to wear them! I also put up a picture of Noelle in her Pony Gait Trainer. This is helping her to figure out what to do with her legs and to get down the motions of walking while being fully supported. She likes it some of the time! :) Enjoy and have a great rest of the week!

xoxo,

Stacie

Whew! What a day!

Today was a busy and crazy day with tons of twists and turns! The day started with physical therapy with Noelle. It went really well until Noelle "zoned out" for about 45 seconds. I was in the kitchen and heard the therapist saying "Noelle?! Noelle?! Can you hear me Noelle?" Then she started to clap her hands. Of course, I went in there to see what was going on. Noelle was not doing anything she doesn't normally do. When Noelle had her hearing test, I said she had selective hearing and I thought this was a part of it. Little did I know, the therapist thinks Noelle could be having a seizure. She was not sure, obviously, she's not a doctor. But she said that I should call her docs and get it checked out. I told her I would check with the docs to see what they want to do.

In the meantime, I had to make lunch quickly and get out the door to Noelle's Cardiology appointment. Noelle has been having low heart rates while sleeping lately. The doctor said he was not too overly concerned, but put a monitor on her for 24 hours to see the patterns. If she doesn't have an episode tonight, then we have to go in the office tomorrow and exchange it for a longer battery. He basically wants her to wear the holter until she has an episode. This should be fun...

We came home and I had an e-mail from Andon's doctor stating that most of his blood work was normal, but his white blood counts were low. She said they were not too low to cause any panic right now, but something to keep an eye on. We have to go back at the end of the week and he'll probably have to have more blood drawn. Also, Andon has always had a bald spot on the top of his head. She is concerned about the bald spot and referred him to a dermatologist. If it is what she thinks, he needs to get the spot removed because the cells can become cancerous quickly if not taken care of. She reassured me that the white blood count and the bald spot were not likely related.

Once I got done with those concerns, I had to move on to the seizure issues. I contacted the pediatrician and (duh) they told me to call her neurologist. The neurologist nurse called me back right away. She wanted to schedule an EEG soon to get a feel for if Noelle has abnormal results that would indicate seizures. Of course, we set it up for in the office and were going to have it done at the end of the week. UNTIL...she said...."and she's not on oxygen or anything right?" uhhhh..... yeah...she is!? Well, that changed everything. Now, because of her complex history and breathing issues, she has to have the EEG done at the hospital. If something were to go wrong with the sedation, they want to make sure backup is nearby. The nurse was not sure if the outpatient lab would be able to do it. By then, it was about 4:55pm. By the time I called the hospital, they were closed. The nurse told me that they might have to admit her to get the test done. If they did have to do that, they would go ahead and do the more efficient EEG and MRI. Just the thought of going back there for another night makes me want to scream. But, I'll do what I have to do for my kids!

Whew! That was my day! Of course, the poor kids nap schedules were gone and they were cranky this evening. Thank goodness for an early bedtime! When it rains it pours...and sometimes actually hails! First thing in the morning, I'll be scheduling the EEG (hopefully outpatient)!! I feel bad because I have noticed Noelle "fuzz out" for periods of time before and never even knew that could be a seizure. Oh well...live and learn....

Time for bed!! Keep the prayers coming....

xoxo,

Stacie :)

YAY!! Back in action!

So, I don't know what happened to the blog. But as quickly as it went down...it came back up as quickly. So much has happened in the past few weeks. I'm going to need to post pictures later...but for now the update!

I took Noelle for her regular visit with the Pulmonologist. It was an AWESOME visit!! She is doing amazing and can now tolerate some time without oxygen all together. Otherwise, she is down to about a 1/2 liter of oxygen and then about 1 liter at night. I'm so proud of her progress.

We picked up her braces and shoes on Wednesday!! They are so cute...better than I could have possibly imagined. The shoes are white with pink stripes and the braces are designed with pink and purple hearts!! She is doing really well in them too and can pretty much stand on her own with the walker. The PT also brought something called a Pony Gait Trainer. This allows Noelle to straddle a seat and it allows her to move her legs and push her self around. It is so exciting!

I was out with Noelle the other day and one of the ladies in the waiting room asked me about her. I told her briefly about Noelle's story and told her that we were really lucky. She replied "No baby, your blessed!" So true...so true!!

The only other issue we've been having with our big girl is with her heart rate. It seems to dip really, really low in the middle of the night to the point that her pulse ox machine beeps off. As soon as the machine starts to beep or if I go in there and shake her a little...it comes right back up. But her heart rate should never dip below 50 and it has been going into the high 30's. Scary. We have an appointment with the cardiologist again on Monday. He said they will put a monitor on her for a while to check and see whats going on. He said as long as her heart rate is coming back up...he is not too concerned yet.

More exciting Noelle news is that we are going to be attending a Feeding Clinic down at UVA late this summer. We are going through the lengthy application process now. It is an intensive 2 week program that will hopefully minimize the amount that Noelle has to use the pump. It will get her more comfortable eating by mouth. The idea is to eat more by mouth and less by pump. They have all sorts of techniques and methods to doing this. People all over the country and world have come to UVA for this program and we are going to be lucky to attend!! I'm sooo excited! We will probably stay at the Ronald McDonald House for the 2 weeks.

My little biscuit Andon has been having some issues lately too. We visited with his new pediatrician yesterday because he has been complaining of tiredness for a few weeks now. In addition, tummy aches, back aches and "brain" aches. I noticed this week that he has been running some low grade fevers everyday as well. They took a bunch of blood yesterday and he was so brave. They are thinking he might have Lyme Disease or Mono or something like that. He's so tough! It absolutely broke my heart to watch him get his blood drawn. I'm an expert at holding Noelle down and making sure they get hers right....but have never experienced this with Andon. I seriously almost cried! I think he handled it better than I did. We should have some results on the blood work at some point next week. Other than that....we are having a BLAST outside in the nice weather.

Never in a million years did I picture myself as a stay at home mom. I thought I would be terrible and would not enjoy it at all. It is honestly the best!! I have enjoyed my time at home so much! I don't think I could ever go back to working full time. It is so nice to have fun with the kids and I work on my new business, Everyday Miracles, in the evening after bed time or during nap. I can work when I want to and set my own schedule! It is heavenly!! I have never been so relaxed. I'm finding that I'm enjoying the kids so much more as well! I have had years of rush, rush, rush....hurry, hurry, hurry! It took me a while to calm down....but I honestly love it! I would not change a thing. Everything happens for a reason!!

The March for Babies is just weeks away now! I'm so excited to be marching with my hubby and kiddos! If you haven't donated yet...please do soon!! Aunt Ada has raised so much money for our team...I am so blessed to have her helping us out!!! She has helped raise over $700 for Team Go Noelle Go!!!!!!!!! There are no words to describe my appreciation to her!! :) :) I need to add that money to the website...we are so close to our goal!!

Happy First Day of Spring everyone!! We hope that you all are enjoying the great weather as we are!! I'll post pictures soon of my peanuts!! Happy Saturday!


xoxo,

Stacie :)

Happy March!!!

The blog has been having some technical difficulties....I took off the pictures to see if that would help! Someone email me if you can see this at snrmikels @ gmail. com. Thank you!!

We have had a pretty crazy week at the Mikels!! I took Noelle back to the Neurologist early this week. In all honesty, it was a complete waste of time. He spent less than 5 minutes with us and the only question he asked was if Noelle was having seizures. He said nothing about the MRI or anything like that. He just said that we would follow up in 6 months. Whatever….I guess that is one less thing that we have to do and leaves more play time!

Hopefully, her shoes and braces will be in next week. In addition, the physical therapist thinks that the shoes and braces will help drastically and that she will be taking steps soon. So, we got an order for a walker with a portable oxygen device attached. I’m so excited about this. This will allow Noelle to learn how to walk without having to have the wires behind her. Super news!

Andon and I were able to get out this week and get all of his soccer supplies. He was so excited and even got all dressed up in his gear for a picture (he is showing you his muscles). I can’t wait for that to start.

I am so touched and grateful for Ms. Ada (my mom says that her friends call her AJ). She is my grandmother’s high school friend and we all have considered her part of the family forever! She has really taken on a huge roll in raising money for Team Go Noelle Go and I’m so thankful for her. Ada has had Noelle on her church prayer list since the day she was born. I know all of the thoughts and prayers helped Noelle immensely during her hardest times. We even got a care package today for the kids including great handmade teddy bears made from some of the wonderful church ladies and a counting book for Andon. They were both so excited!! Ada, I am sure you are reading this… THANK YOU! There are no words to thank you for all of the hard work you are doing for such an amazing cause. Granny, you sure do have awesome friends! I know my mom and dad have been helping a lot too! I love you all! There is a button that you can click on the blog homepage that will link you directly to my March for Babies homepage. This button will allow you to donate directly online. Or you can always send me a check made out to the March of Dimes. If you need our address, please email me at snrmikels@gmail.com .We are still so far from our goal, but people like Ada get us closer and closer everyday!!! I have a bunch of flyers…if you would like to put one up at your office, school, or church….please let me know! I want to spread the word about prematurity so that people know that it can happen to any of us!! I had amazing prenatal care…and unfortunately…it didn’t matter. There is no explanation as to why Noelle came so early…but she will have to deal with all of the side effects of prematurity for the rest of her life.

Yesterday, Kathy from Ross’ and my dad’s work donated a ton of toys to us!! The kids must think it is Christmas around here! They were so excited and Andon has been playing all day with the cool horses and barn sets. We even got our first “girl” toys for Noelle. We really have not bought her a whole lot because we had Andon’s baby toys. It is super exciting to see girl toys in the house. I must confess…I was so excited about having My Little Ponies around again….I might have to fight Noelle to play with them! :)

Speaking of my little peanut….Noelle has entered a phase (like typical toddlers do) of not wanting to go to bed at night regardless of how tired she is. She got so ticked off on Wednesday night that she pulled the cannula and brand new tape off of her face. I went up and replaced it and didn’t think a whole lot about it. Yesterday morning, I noticed that she had red bumps on her face and I just figured she had torn some skin off with the tape. This morning, it was terrible. The bumps had turned into welts and there was an abundance of puss pockets underneath the clear tape (eww…I know). I pulled the tape off and it smelled terrible. So, I ran her into the pediatrician and he diagnosed her with a pretty bad bacterial infection on her face. He was glad that we came in today…because if it had waited the weekend…it probably would have been bad for her. Now she has two more medicines to add to her list. You can kind of see the bumps in the picture with the teddy bear…but it looks much worse in person. Now the tricky part begins…we can’t tape her face for a while. So, we are doing some pretty creative things to keep her oxygen on. I think it will be an interesting weekend.

Nonetheless, we are so blessed to be on this journey with precious kids…and have such wonderful family and friends to support us! I didn’t realize how long this post turned out to be!! I’ll update everyone with pictures when the shoes and walker comes in!! I’m so excited! Happy Friday!!

Xoxo,

Stacie :)

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!!

Cabin Fever

Cabin Fever is setting in for everyone except Noelle. Andon and I are going nuts staying inside all the time. It is suppose to be pretty nice today...I think the playground is calling our name. The starbucks drive thru is calling my name as well :)

We have had some really quiet and happy days around here. Andon (I think) is FINALLY starting to adjust and likes being at home. I think I say this every post. But...this time, his behavior is really turning around and we have had a really good week!! Noelle is doing better too! We have a very full week next week. I have to take Noelle to all of her doctors appointments. I think we have an appointment every day next week. The GI doctor and Pulmonologist are included next week. It is sure to be crazy but I'll be happy to get it over with all in one week. Noelle is doing great with her new physical therapist. She is actually starting to put weight on her legs...which is HUGE news!! She has never wanted and has always really objected to weight on her feet and legs. But...she is standing up (of course, not by herself and really supported)...but she is doing it!!! I think it will be a while before she is actually crawling or pulling up.

I signed Andon up for spring soccer last night. I'm so excited about giving him something to get excited about. I'm also going to get our Thomas tickets for March as well. The real Thomas the Train is in Baltimore in March/April...the tickets are not that expensive at all and it is a really fun day. We went to PA last year and had a blast on Thomas. I can't express what a freak about trains my son is!! He would play with trains and talk about trains all day if I let him. :) :)

They are calling for snow out here and I think all over the east coast for this weekend. For once...I don't want snow. Andon and I have a playdate on Saturday morning and we are both looking forward to it. Not to mention, I'm in serious need of some adult interaction. This staying home is nice...but I would love to talk to people other than my kids and husband. I love them all dearly...but am used to talking to people.

Have a great rest of the week!!

xoxo,


Stacie :)

A great and quiet week!!

We LOVE quiet weeks around our house!! Everything is going great. Noelle has really been on the move this week. She still doesn't really move her legs a whole lot...but she scoots around on her butt using her arms. It's so cute...and she is getting faster! She scoots into the kitchen, all over the family room and doesn't like to stay in one place for very long anymore. I have had to be really flexible with her feeding schedule and am only able to feed her while she takes naps and sleeps at night. She has been scooting so far that I really think she'll scoot out of her g-tube!! I don't know what I'll do when she starts to nap less! Noelle moving around is really exciting. Even Andon likes to keep track of her as she scoots around the house...until she gets to his toys...then he just wants her to go away! I think we have a long way to go to work on sharing!

Andon is still struggling to behave. He is really starting to regress. I feel terrible that staying home has made him go backwards. It is hard to realize what is best for one child is probably the worse option for the other. I think it will just take time to adjust. It seems like we take one step forward with him and then two steps backward. Eventually, we will make progress together.

I got an exciting phone call this week. The March of Dimes called us to ask me to speak at the March for Babies kick off breakfast to share our story of prematurity. I think they called us a "Mission Family." Basically, I will be talking about how prematurity has changed our lives and gives us an opportunity to share our story. It puts a face to the mission of the March of Dimes. They will also be putting together a power point presentation of Noelle's pictures. I'm excited about it. Speaking in front of people doesn't bother me....but I've never spoke about something so personal and so life-changing. So, I'm working on it. Hopefully, it'll turn out well and I'll do a good job! :) :)

Speaking of March for Babies...if your reading this...please donate to our team or join our team! All you need to do is click on the March for Babies button on the side of the blog. Even $5 would make a difference. There is no minimum. I know money is still tight for everyone...but skip Starbucks for 2 days, don't eat out one night, or rent a red box instead of going to the movies....there are so many ways to cut back and be able to give back. If everyone I know could donate $5 or $10, it would make such a huge difference. Not to mention, I would be so excited to meet my goal!! Thank you in advance! :) :)

Well, thats all from our house! Happy Weekend everyone! :) :)

xoxo,

Stacie :)

Good Times...

Above is a picture I took while Noelle was in the hospital!! Future Dr. Mikels!!


We have been having some much better days around the Mikels house! Noelle seems to be back to normal...still choking/gagging/retching and having diarrhea...but in a GREAT mood!! Andon seems to be leveling out and is pretty much understanding that we are staying home now. His behavior has improved a lot! I think he was just confused and testing the boundries.

The kids have actually been playing together and enjoying each other. Any time Andon wants to play in another room he says, "C'Mon Mommy...get Noey on a tank...she wants to play with me!" The great part about that is its true! Noelle wants to follow Andons every move. She is now scooting across the floor on her butt. No one seems to think she'll be a crawler (she dislikes being on her hands and knees way too much). But she made some HUGE progress this weekend. She made it over to the fridge and played with the magnets on the fridge. She made it over to the train table to harrase her brother and as he says "she's eating my trains!" They are cute together! Physical Therapy came this morning and was unable to get the stander. She said she would have it for next week!! :) :)

Noelle got some shots on Thursday. She finally received her Synagis shot (to protect her from RSV) and caught up on more immunizations. I think her 6 month shots are now caught up! YAY!! More progress!!

On another note, I literally fell into a job opportunity! I'm not sure if it is right for me yet...but it would allow me to stay at home during the week with the kids and do paperwork and then do home visits on the weekend. It would be as a Service Facilitator for the same Medicaid Waiver that Noelle is on (EDCD Waiver). This would give me something else to do during the week, get me out on the weekends meeting disabled kids and families just like mine, and allow me to help out the family financially. If it doesn't work out...oh well! If it works out...it might be the perfect opportunity for the situation we are in. I'm excited about looking into it! I've never been one to sit around...and I've never thought of myself as a great stay at home mom. This would be such a great balance. Plus, I could take cases close to home, could pick my hours and do things when it fits into my family. We'll see...cross your fingers for me!

I also joined the Family Teams Committee for the March for Babies and am going to be the Chair for the committee. This is something else I'm super excited about! There is no better way to give back!! With that said, Team GoNoelleGo is up, running and taking donations!! We've set our goal high!!! There is a button on the home page of the blog to donate! Please help us out and donate or fundraise with me. I believe there is a way to send the link to your friends and family. Please feel free :) :)

Hope everyone is enjoying the new year! I know we are!! :) :)

xoxo,

Stacie :)

March for Babies!!!

Hey Friends!!

I set up our new March for Babies donation page. Team GoNoelleGo will be walking in Reston, VA on April 18th!!! It was so much fun last year and this year (knock on wood and cross your fingers)...we plan on walking as a family with the team!! Last year, Noelle was back in the hospital and up on IMC. There was no time to really raise money for such a great cause! I felt bad about not being able to contribute a whole lot last year. This year, we are setting our goal at $1,000!!! Please help us acheive our goal in honor of all the families affected by prematurity. I'm going to bust my behind to get to our goal!!! So, please help us out!! I would love more team members to help raise money as well. If you don't want to start your own team...join GoNoelleGo and be able to contribute!! :) :) The more...the better! Thanks again (as always) to our family and friends that keep track of us and continually think and pray for us!! :)




xoxo,

Stacie :)

Bubbles!

The kiddos learned the sign for 'bubbles' today and they are loving working on the sign language!! Even Noelle gets sooo excited for bubbles after she signs for it!! Andon is finally excited to be able to understand something that Noelle wants! YAY!! More progress!

We have been been having a really hard time with Andon's behavior lately. He has really been acting out and thriving on that negative behavior. Poor guy. I feel bad because I think if I were able to give him more one on one attention...it would avoid these bad behaviors. I'm trying to give him incentives to behave well and incorporate him in helping me with Noelle's tasks. We're working on it.

I took Noelle to the doctor that works on her development. The last time we went to him was a complete waste and he basically just told me that she was behind and to deal with it. Today, he was much better. He spent a lot of time with Noelle. He told us that Noelle had the things she needed to acheive more developmentally. However, doesn't know why she is not making progress. He basically told me that these were some questions that he was going to refer to the neurologist. She really has some major sensory issues with being touched. This is also something to work on. He did say that most kids that are able to sit up by the age of 12 months are typically able to walk and talk to some degree. This is good news!

We started with a new physical therapist who is going to try and get Noelle a "stander." It is something that will help Noelle learn how to put weight on her legs and feet...trying to move her closer to walking! I'm looking forward to the stander coming next week. I'll be sure to take pictures!!

Hope everyone is having a great week!!

xoxo,

Stacie :)

Blessings and Frustrations...

Happy Saturday! We are still at home and loving every minute. Noelle is still absolutely struggling to keep any liquid in her body. I continued to give her the new formula eventhough it is making her have massive diarrhea. The nutritionist at the pulmonologists office was the only one to get back to me on Thursday. She told me to keep up with the new formula. Going back to the old formula, which is harder to digest, may actually be worse for her system. We are still feeding Noelle her regular feedings, however are adding in Pedialyte whenever we can. As of tonight, we run out of the concentrated formula. So, I'll be getting up every 2 hours to change her formula until the concentrated formula shows up on Tuesday or Wednesday.

It frustrated me to no end that I had to call the GI doctor and leave about 4 messages before anyone called me back. Finally, I think my message scared the nurse and the doctor himself finally called me back. He told me that we'll be in for more tests next week if her "situation" doesn't improve over the weekend. He told me that she just needed to hang in there and add fluids all the time. He seemed very distant...like he didn't really care. Whatever...we'll see what happens. Doctors suck sometimes... I wish someone could explain to me how to negotiate with an 18 month old to stop gagging/choking/retching long enough to take the fluid in and then avoid pooping it out.

I went and said goodbye to my job on Friday as well. They had an awesome book of all the classroom pictures and other memories from the past since opening. It was tough. I hated leaving them the way I did. I still hate it. I still miss it. I know pretty much everyone understands why I had to make the decision I made....I just think some wish I had done it in a better way. All I can say...is I agree. I wish I would have been able to give notice. Unfortunately, I couldn't. No one can really, truly understand until they are faced with the same situations. I hope to God that no one else is faced with what we have dealt with in the past few years. I know that God gave us Noelle for a reason and for that we are blessed and thankful. What doesn't kill us only makes us stronger. Both of our children are huge blessings and it has been such a pleasure to be parents to such amazing children. Anyways...back to school (I get sidetracked so easily). I had planned on taking Andon with me. But honestly, yesterday was the first day he didn't ask about school. So...he went home with Daddy and I didn't explain where I was going. We are planning some playdates with some of his school friends and signing him up for soccer...so I'm planning on keeping him very busy. Not to mention, we started having "lessons" at home to keep the academic work going during Noelle's naps. He really enjoyed it and loves to learn.

There are so many blessings in our lives right now. I look around during the day and can truly appreciate my kids. I stopped while I was loading the dishwasher yesterday and realized that I was not rushing. I think this is a first! It was a nice feeling that I had all day to get that done. I am so used to rush, rush, rush...get out the door...get home....dinner...baths...bed! Whew....it was a nice realization and I'm lucky to get to experience it. Not to mention, the fabulous time I'm having with the kiddos. Don't get me wrong, being a stay at home mom is the hardest job I've ever had. It is a challenge to keep them busy and to get everything done with Noelle that needs to be done without neglecting Andon. I'm finally starting to get into a groove. I'm starting to find creative ways to entertain Andon while doing things with Noelle. Things are looking up!

Now if we could get Noelle to stay hydrated...we would almost be normal. She has lots of tests coming up in the next few weeks. So, we'll see how we all handle that. Especially dragging Andon around with us. Portable DVD players are wonderful!!! :) :)

Thanks for the continued thoughts and prayers!! We get such wonderful support from the majority of our family and friends. It is amazing to think of how far we've come and how much our family has accomplished! I can't wait to see what the future holds...

xoxo,

Stacie :)