Bella with Grandma Gudde. Check out the belly on that girl. We can't keep her shirts down because her belly just pushes them back up. HA HA!!

Matt does not like this pic, but it is the only one I have of her four teeth. Well, and as her mommy, I think her teeth are really cute. Look at how big the gab is on her top teeth!!

Finally some pics!!

As you know I like to do the before and after pics. Well this one is for all of our girls at CMH PICU. Remember the Party at My Crib shirt??? Well here she is 5 months ago wearing it. It is way to big here and well just look at her and how far she has come. Well I found the shirt when I cleaning out her dresser. I decided to try it on one last time. Well I got it on her, but barely. And now look at my baby girl. All smiles. All filled out and looking just fantastic!! Not to mention she is off the vent for this pic. Today she has been off the vent for a total of 1 hour 10 minutes. She stayed off for 45 minutes at one time this afternoon. She stayed on room air and she never got below an spo2 of 94%. She had absolutely no signs of respiratory distress. We put her back on the vent because we didn't want to push it. So Bella Baby I am so proud of you. You are wowing the world just as we all knew you would!!

This picture was taken yesterday. She is just so full of smiles. Just look at that big girl.

Here she is all tuckered out. I just love this picture. She is really too cute for words!! Thanks Aunt Steph for the new supply of Baby legs. We love them!!

No new news

Well as I said a few days ago, we are trying to get the house refinanced so we can add on. Well the bank was unable to give us a definite answer. So we are waiting. I hate waiting!! But I am trying to be patient. I just hope it works out. But I know that no matter what, it will work out in God's plan. And I know that God's plan is not always my plan. But any how if you could just pray that it goes well. Our loan officer was unable to project either way. She said we may get it and we may not. I really think this new addition will help us tremendously. Trust me we really need the extra space.
Bella continues to amaze me each and everyday. She really is just way to cute!! I am suppose to be getting my new camera by UPS tomorrow. So watch out, I am going to go a little camera happy.
Well, no matter the outcome of the house thing, we will just keep making it work like it is now; that is until we come up with plan B.
On another note, Madison and I spent the entire day aways from the house. We went to my sisters house for the day. Then mom and I spent the afternoon at the bank. I have to tell you it is hard for me to be away from the house. I want to get out so bad, but then when I am out I feel very anxious about getting back. I am just still not really comfortable about leaving Bella. It is not that I don't trust our nurses, because I do. I just worry when I am not there. And if I am out and my cell rings, my heart always drops to the bottom of my shoes. I always instantly think the worse. I don't know if that ever will go away. I am sure it will numb a little with time. I have an appointment Thursday and a lunch date on Friday and we are possibly working out a scrap booking day for Saturday. I tell you what, I scream help and you all definitely deliver. So thank you all from the bottom of my heart for helping me save my sanity!!
Well that is all for now
Love to All
Megan

Thank You

Thank you to everyone. Your out poor of love never ceases to amaze me. I think my friend Angela really hit it when she said it is January and everything is cold and dead outside. That makes a difference. I hate being stuck inside!! But there is light at the end of the tunnel. My mom and I are going to the bank on Tuesday to get the house refinanced. Mom and Dad are kind of stuck here (not that I mind) and so are we. It is a brand new house we are living in. My dad just built it around two years ago. The only problem is that is started out as one bedroom and one bath. Well since we moved in, mom and dad have made a make shift apartment in the garage and we have built a bedroom into the floor space of the garage for Abby and Madison. Well Abby and Madison's room is the size of a large walk-in-closet and Mom and Dad's apartment is far from finished. The bathroom is not finished and we have not even started on the little kitchen. So we are going to be adding two rooms to the house. One for Bella (to get her out of the living room) and one for Abby and Madison. We are also going to be adding a gigantic covered back porch. This is where I get really excited. Matt is going to put ceiling fans and light out there. I am going to break down and buy really comfy patio furniture and well it is just going to be really nice. We have the biggest backyard I have ever seen and I can't wait to sit and watch the girls play. So with the ceiling fans and it being on the north side of the house, it should always be fairly cool. So this means it will be a perfect place for Bella to also come outside and sit with us!! YEAH that is the best part. It will be perfect I can feel it!! So we should hopefully break ground in the next few weeks. That is as long as the house gets refinanced. Since my dad built the house, it appraises much much higher than what we owe, so I hope that makes it easier to get more money. Matt and I are renting to own right now and hopefully withing the next year or so we can be official home owners. Then Mom and Dad will probably move in a couple of years out to the country.
So I am feeling tons better. It always helps when a plan is forming and you can see "light at the end of the tunnel"
Also I will not be able to post any pics of sweet little Bella for about another week. Madison decided that she would give my camera a bath in coffee!! Not to mention the week before she gave our phone a bath in the sink. Well the camera and the phone are DEAD!! FRIED!! So I have a new camera on the way. Matt went ahead and ordered me a new one (Darn!! HA HA) So as soon as I get it in I will start snapping photos like crazy to make up for the lack of photos now. Trust me she is just coming along leaps and bounds lately. Before she would show improvement once every two week or so. Well now she is just showing improvement everyday. It is just like watching a regular 5 month old progress. (I would say that is about where she is at). She is working hard to sit up and she is getting better at lifting her head when she is on her tummy. She coos, she wines when she wants attention. She knows what you mean when you say "Bella I want a kiss" because she turns to you and opens her mouth for a kiss every time!! She giggles and smiles almost constantly. She is reaching for toys more on her own now. She just in general seems to be more aware of her surroundings.
Also we have had SEVERAL requests to move to KC!! Well Matt does not seem to keen on the idea. But girls seriously if it was up to me, we would be there in a heart beat!!
Love to All
Thank you for your prayers and love
Megan

YUCK

Okay that is how I feel....YUCK. I don't normally talk about myself because this is for Bella but today I am feeling really down. I basically have fallen into this pit and I can't even see the way to get myself out. I have went from being a Director of Nursing of a decent size nursing facility to a stay at home mom. And not just any kind of stay at home mom but I don't leave. I mean it I maybe get a chance to leave my house around 1 hour a week total. I have nursing 4 days a week so I can leave during the day some. I do go to the grocery store on occasion but that is about it. I don't have anywhere else to go. It seems pointless to drive around aimlessly and waste gas money I don't have. I have been trying to occupy my time at home. I don't just sit around all day. I clean approx 8 hours a day. I am not joking. For those of you have seen my house you will believe me. I take care of the kids and then if I have time I read a little or scrapbook a little. You are probably saying Megan why don't you go get a job. Well I can't really. I really feel like someone needs to be home. It never fails that almost every week our schedule does not work out as planned. So if I did have job, I would be calling in all of the time. I can't work evenings because I just can't leave her and the other kids with Matt. I keep thinking isn't there some kind of organization I can join or something I can do to occupy my time. Well there is not a lot of things to do in Oswego. And I can't do anything unless it allows me to take Madison with me. I am just having one of those I feel sorry for myself days. I cry all of the time and then when I am not crying, I am just angry about my situation. I just want to be able to buy our house but our credit isn't great. We are still living with our parents which isn't too bad except we don't have any room for all of us. Almost everything Matt and I own is in storage. I am sure there are lots of solutions to my problems that seem so easy but until I crawl out of this pit, none of them are going to seem workable to me. I just want to be able to spend time with my husband once in awhile. I wish Isabella had a bedroom instead of sharing her room with the living room. Okay enough already!! I just need to get away from here for awhile!! I am thankful that Isabella is still with us and I praise God everyday for her. None the less, my life has changed drastically over the last year and I guess I am not great at coping. This is not intended to make anyone feel sorry for me. I don't want that. I just want to know if there are other people out there struggling like this . Does anyone have any suggestions. Or just pray.
By the way Isabella is great. I will post more pics later.

Smile Pics

I couldn't just pick one of these pics to show because they are all so cute. She is doing great these days and seems to be just so happy.

Okay this is not the best smile video. I swear she must be camera shy. Everytime I get the camera near her, she clams up!! She really does get to smiling and then she looks like she starts giggling!! I just wish I could catch it on film. So anyways here are some smiles from Bella Boo. I will keep working on a giggle video.

Also I see there are lots of people from all over the United States logging on. Just curious as to who is visiting so I would love your comments.

A Special Birthday Wish

As many of you know because you also follow Gabi's blog, today is Gabi's first Birthday. Gabi was a precious little doll who graced us for only short amount of time here on earth, but continues to touch our lives from heaven. We are celebrating Gabi's Birthday today by releasing hot pink balloons at noon. HAPPY BIRTHDAY ANGEL BABY!! Please take time today to go to http://gabrielesheridan.blogspot.com/

UPDATE:

At noon today we celebrated the life of Gabi by releasing our hot pink balloons. Matt thought he was video taping the balloons going up but somehow he didn't!! But here are a few pics.

The tag on the balloons with a special butterfly for Gabi.

Hot pink balloons ready to be sent.

ONE....TWO....THREE..... Happy Birthday Gabi!!!

New Tricks

Isabella has been like a brand new baby all week. She has been staying awake all day with only a little nap in the afternoon. She then sleeps all night. She is doing lots of therapy here at home and is doing really well with that. The big thing is how much she is smiling and cooing. Oh and she is giving kisses now!!! She is using her arms and hands more and more everyday. She has this cow bell that she loves to ring and every time she rings it, she just grins from ear to ear. I just can't believe, new year, new baby. It was like she just woke up and came back to us. She is just like she was back in July when we came home the first time with the vent. Smiling happy and interactive. I am just so thankful. She has also cut two more teeth. She now has two on bottom and two on top. You can see little buds all over her mouth where she is cutting more teeth. She doesn't seem to really mind, she just keeps smiling. Hopefully we will reach our February goal of sitting up with just pillow support. At this rate who knows how far we will be next month. The sky is the limit!!!
I will try to post some pics soon.

Cardiology report

We went to Joplin today to see our cardiologist. Well we got really good news. It doesn't look like we are going to have to have any more surgeries until toddler hood at the earliest and maybe not even then. It all depends on how her homograft does. (that is the piece they put in her heart that will need replaced several times in her life). So anyways nothing has changed with her heart. This is good news, we don't want things to get worse. Since she is growing and doing so well, she is just basically growing into her heart. She compensates for her leaky valve so much better now. In fact the Dr. today mentioned maybe being off the vent and having the trach out in the around a year. I think that is a really optimistic statement, but you know me I love optimism!!! He also wanted Matt and I to know that the vent and the feeding tube are not what is making Isabella better. She is better because the feeding tube and the vent have given her a chance to grow and get better on her own. He did not need to increase her meds and he said since she is growing and not needing to be increased, that means she is basically weaning herself off her meds. He said we would start weaning more meds once she comes off the vent. So this is all really great wonderful things. So far the new year is looking really good and promising. Miracles, Miracles, Miracles!!! We are seeing them everyday. Also I want to share one last tid bit about today. As you all know Isabella touches many lives and I think she has touched her Cardiologist. He as known Isabella since she was 2 weeks old and has seen her go through some pretty tough stuff. Well he knew she was supposed to be blind and since he has not seen her since September, he assumed she was still considered blind. So today when he came in to do her echo, he said "Hi Isabella" she then turned to him and looked at him. You should have seen his face. He said "She can see!!" And I was like YEA!! You could tell he was really excited for her. So we are released from seeing cardiology until March 11th. We also go to fit Isabella for a wheelchair that day. So exciting new changes we are seeing!!! All I can say is thank you Lord so much for what you have given me and my family. For we would have NEVER survived without you!!

So Far this year is turning out well!!

On New Years eve Matt and I stayed home with the girls and watched the ball drop. As soon as the ball dropped, I felt instant relief. "Thank you God that this year is over" It was the most emotional and crazy year so I am welcoming 2008 with open arms. I pray for us to be able to move on and start living. We have not "lived" in an entire year. We have walked on pins and needles and held on by a thread. I am ready for Isabella to start her recovery and enjoy every minute of watching my daughter develop. I will wait as long as I have to but I know that Isabella will someday recover.
Yesterday we went to Kansas City for clinic. Everything looks great and they lowered her vent settings. She is now as low as she can go on pressure support. So this is really good. In fact the doctor said she would probably we off the vent sooner than we hoped. So we are reaching for a goal of one year. Then maybe another year before we get rid of the trach. So we will see!! We are now taking her off the vent more and more and hopefully in the next few months we will be off the vent for a few hours at a time.
Next we went to PT and OT. They taught Matt and I all kinds of great things to do with Isabella to help her develop. So we worked a lot today on oral stimulation and tummy time. Our goal for February is for her to be sitting with just the support of a pillow.
Tomorrow we are headed to Joplin for her cardiology appointment. I am nervous and excited. I know she has to be doing better from a cardiac stand point because she is needed less and less ventilation. So we will see what they say tomorrow.
So that is it for now. I hope everyone had a safe and happy new year.