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 :)

Home is nice....but....

It is so nice to be back at home after a week in the hospital. We were about to leave yesterday when the nurse came in and told me the formula that we spent 4 days letting Noelle adjust to was no longer being made in the form we needed. She was put on a concentrated version of the formula that the manufacturer is discontinuing. The powder version is still available, however, is more at risk for bacteria growth if left out for more than 2 hours. Because she gets fed all night, I would have to get up every two hours, wash the bag out and then add more formula. Not really ideal.

Then in addition, today....


She has been having worse pooping issues and is back to gagging and choking. I have no idea what the difference is between the hospital and home. I've done everything the same. I put in a call to the GI doctor to see if I should switch formulas again or just go back to the old formula. I haven't heard back yet. At least we are at home. Sadly enough, I think it is more frustrating to figure all this out from home. So, in the meantime, we are doing lots of laundry but are hanging in there! Wish us luck... :) :)

xoxo,

Stacie :)

We're packed and ready to go!!

That's right! We are waiting on discharge paperwork. The nurse said it's pretty slow right now and we should be able to leave before 1pm!! YAY!! Another hospital visit is over! On the up side, we have had a really fun time catching up with all of our INOVA friends. It's always nice to have friends to come back to...even when its not under great circumstances.

Well, time to load the car and get the girl bundled up! :) :) I could not be more excited for a homemade dinner tonight, tucking both kids in and then sleeping in my own bed!! OH...and giving the hubby a big kiss! :) :) Until next time INOVA!

xoxo,

Stacie :)

Having the poops...stinks!

Noelle has continued to have to poops. Things are looking up though. Without getting into details...it seems like her problem may be starting to slightly improve. Although, she is starting to show some small signs of dehydration...they are not going to change anything for today. I think everyone is hoping that her "situation" just continues to get better. IF everything continues to gradually improve...we are looking forward to going home tomorrow! I think they tested her for everything under the sun and so far...I only know that she does not have roto virus! wahoo! They started her on some probiotics yesterday and I'm hoping that is going to start working as well.

Since switching to this new formula...Noelle has gone through her entire feedings without choking/gagging/retching!! I even asked the nurse to take away the Ferrell Bag for last nights food and it is still gone this morning! That is HUGE for Noelle and a big step in the right direction for feeding!


A nice benefit to being here is that Noelle gets PT/OT pretty much everyday!! The PT/OT teams here are amazing! Other than that, same old, same old....not much new on the IMC. Still pooping...but hoping to go home tomorrow!

xoxo,

Stacie :)

5 days and counting....

Is how long it is taking Noelle to get out of the hospital for an Ear Infection. Thank goodness it was nothing more serious...or we'd be here for another month. Her lungs look amazing!! In fact, she was trying to take off her cannula today and chew on it. I think, for now at least, the cannula serves a much better purpose in her nose. She seems to think she doesn't need it anymore. :) :)

Her diarrhea and gut problems seem to be the same. They are getting concerned and won't let us go home until it is fixed. The problem now is that her output is more than her input...which if this continues...will result in dehydration. So, they are running a bunch of tests to try and get to the bottom of this. They want to make sure the meds and antibiotics didn't create another bug in her tummy. Of course, she did nothing but have blow outs this morning. And...since they ordered the tests...nothing! I'm hoping that she goes back to normal and we can go home tomorrow. Who knows? I made Dr. Fields promise he would find a way to get us out of here before he left hopsital duty. But, he has basically turned over Noelle's care to the GI doc on now because its simply is not a lung issue anymore.

Thats all for now. Noelle got a visit from her daddy on his lunch break. She was SOOO HAPPY to see him. She was exhausted before he go here and perked up and played with him forever once he arrived. When he left, she finally calmed down and is now napping. Andon is still having some troubles with "missing mommy" at home. This is the reason he hates for me to take Noelle to the doctor...because he thinks we won't come home for a while. I talked to him last night and he doesn't really understand why I have to stay with her. He keeps repeating that the "doctors and nurses always take care of Noey...so you can come home!" Poor guy....

Other than that, we are just waiting to go home! At least Noelle is in good spirits about it. I'm tired and ready to sleep in my own bed....soon enough! :) :)

xoxo,

Stacie :)

Happy New Year...

Well, shortly after the last post...I called Dr. Fields (he had asked me to call and update him on Wednesday to let him either know that Noelle was better, same or worse) to let him know that she was not better...and possibly worse. I told the nurse to let him know that she was hanging in there but was a little worse. Here I was thinking that he would tweak the steroids or some other meds but no. The nurse called me back and told me to take her to the ER. I basically told the nurse no and then Dr. Fields called me back. He said with her getting worse on lots of steroids and antibiotics...she needed to be seen again. He told me to pack a bag because he would probably admit her. He asked how how much oxygen she was on. My response was "uhhh...5...6...uhh....8 liters." Yeah...he didn't give me a choice. In the back of my mind, I knew that she should not be on that much a home and getting nebs every two hours...but I just really wanted to stay at home!!

We headed in on Wednesday night and as soon as the ER attending doc saw her, they were getting her bed ready upstairs. She didn't look so hot. She was breathing really hard and fast and working entirely too hard. Not to mention, after an hour long, huge neb treatment, she was still wheezing and working hard. After 4 nurses trying, she finally got an IV.

We finally got to her room on IMC (Intermediate Care-which is like the rooms in between PICU and the PEDS floor) meaning she was not critical but not ready to be on the regular floor. Needless to say....we are still here. Her respiratory status is amazing...she has recovered well!! Dr. Fields thinks that the ear infection was just more than she could handle and caused her respiratory issues (it doesn't take much with Noey). When we first got up here on Wednesday night, she was on 8.5 liters at about 80% oxygen. Today, she is pretty much back to her baseline and her o2 sats are just about perfect. YAY!! She received IV antibiotics and steroids until yesterday when her IV stopped working. Since she was already here, we are trying to tackle some of the GI issues that have been a big problem for Noelle the past few months. She had her Upper GI on Thursday afternoon. It showed that her nissen was still intact (YAY!) but that her gastric emptying was delayed. So, he switched some of her meds around and changed her formula to a formula that is already partially broken down. This makes it so her intestines don't have to work as hard to break it down...hopefully speeding up the process to empty in her stomach. The problem with this is that something has caused major diarrhea.

Noelle and I spent New Years Eve alseep in our room!! We missed the ball dropping entirely. We were both exhausted...it was a nice way to ring in the new year. Hopefully, projecting a quiet and restful new year!

Since her respiratory problems seem to be under control...they are now trying to fix the gut problems. She has now been taken off the motility meds (the ones that promote a speedy gastric emptying) and kept on the formula. It seems to be helping. Her diarrhea is better but still there. Dr. Fields doesn't want her to go home until we get this diarrhea issue under control. So, Hopefully tomorrow or Tuesday we'll be on the way home!! AND...we'll be taking home a Noelle that doesn't cough/choke/gag or retch!! She has been a totally different Noelle the past day or so...with the exception of the diarrhea! :)

Anyways, thats our story for now! The one great part about Noelle getting admitted is seeing old friends! Many of our NICU friends, Respiratory Therapists and OT/PT friends have come to say hello and marvel at how big Noey is getting! She has been entertaining them with her big waves, saying "uh oh" and growling! Not to mention, the great reception we had on IMC when we got here. We have had all of the same nurses and they are all so wonderful! There is a reason we always come here...because the people are amazing and so incredibly great at what they do!! We would much rather be at home...but I know that Noelle is well taken care of here and loved a lot!

Thanks for all of the prayers and well wishes! We'll be home soon....


xoxo,


Stacie :)