Just So Busy!!

With Spring here, and it has gotten really busy around my house. We have been working on the yard for hours and hours on end!! We are also getting ready to break ground and add the new addition onto the house. There is just so much work to be done. My mom and I have been weeding out flower beds and picking up left over brush from the ice storm. Today we actually starting digging out our ditch. OUCH!! Every single muscle in my body hurts right now. In fact it hurts to even type this!! Our yard is really high at one point and then it goes down into some really low points. Well, the low points are now what I refer to as "the swamp" So we are in desperate need of lots and lots of dirt. Matt is going to rent some kind of tracker to move some dirt around and try to level some things, but we still need loads and loads of dirt to level the area for our new addition. Imagine that, paying lots of money for dirt!! Oh well, what needs to be done needs to be done. So that has been our life the last few days. We are going to Home Depot tomorrow to price everything. If it is nice, we are going to take Isabella and her Aunt Stephanie.

As for little Miss Bella, she is doing great. She still has some puking issues, but it seems she only pukes when she gets her medicine. And this is mostly happening when she gets her Captopril (her blood pressure med). I don't think the Captopril has made her puke before, but we got it filled at children's mercy this time and they make it different than our pharmacist here. They make it at a lesser strength, so she gets 14ml of it at a time. That is almost 1/2 of an ounce!! That is quite a bit of medicine to stomach. Our pharmacist however, mixes it so she only has to have 1.4ml of it at a time. So hopefully when we run and out and get it re-filled, she will stop puking it all up.
She is getting so long. She doesn't look like a little baby anymore, she looks like such a big girl!! I have noticed over the last few days, that she is reaching for things more as long as she can see them. Last night she was looking at this light wand thing that Birth to 3 gave her and it was sitting right next to her head (so it was really close to her face) Well, she just kept staring at it, and then she started licking it!! It was hilarious. I have never seen her do anything like that before. Well of course I did not have my camera ready!! Darn!! Well I will try to get her to do it again so I can get some video. It is definitely a must see!!

Clinic Day

Today we went to KC for clinic. Everything went well. They lowered her pressure support on her vent. She is now officially back down to what she was before surgery, so we will just keep going down from there. I don't think she can wean down too much further without being switched to more of a CPAP mode. This will be where she does most of the work. She does breath over the vent now, but it always gives her 16 ventilated breaths and then it will also help her breaths along. I don't know if any of that made any sense!! Oh well.
We mostly discussed her puking. She projectile vomited for them in the clinic so they all now know what we are talking about. They put her on a very low dose of an antibiotic for this. It is not for infection, but it is to help increase her gut motility. We will have to just wait and see if it helps. Also we are trying to wean down her diuretics and her potassium and sodium.
We also got a chance to see Micah today. It was so good getting to see her and spend some time with her. We then went up to see Amy and Ava. Ava looks so much bigger than when I saw her three weeks ago. Please continue to keep her in your prayers.
It was a good but VERY long day. We took Madison with us and she had to stop in every town to use the bathroom!!! So the 3 hour trip took us 4 hours. Oh well, she left and came home in the same pair of pants, so she stayed dry ALL DAY!! YEAH MADDY!!

Happy Easter

Abby and Sarah. Happy 7th Birthday Sarah!!
Maddy egg hunts
Bella in her pretty dress
Okay, so I had this nasty old yucky brown buffet. Well, I wanted to spruce it up a little, so I painted in and then sanded it to give it that antique look. I personally love it. However, I have gotten mixed reviews!!

Bella and the Easter Bunny

So there is not much to report. Our cardiology appointment went well. He said it looks like everything is working as it should. So we don't see cardiology again until the end of next month. They did do an echo and her pressures look great. Enjoy the Easter Pics. My children are literally bouncing off the walls with all the sugar they have consumed today!!

Under Construction Again

Well I am bored, so I am renovating the blog again!! I hope you all like the new template. I am going to re due the entire side bar and the bottom of the blog. I thought everyone would like something different to look at. I have to say, it is tough to delete everything!! I had to take a deep breath as I hit the delete button!! So give me a few days to get it completely done. Bella has a cardiology appointment tomorrow in Joplin. We are going to make a Hobby Lobby stop while we are there. You know, because Bella loves Hobby Lobby and she requested it!! HA HA!! I have changed her feeding schedule and I think it might be working better for her. I have started feeding her continuous at night for 8 hours. So she gets done eating at 8:00 a.m. and then she eats again at noon, 4:00 p.m. and then at 8:00 p.m. This will give her more time between feeds to digest. I think she is a big girl now and she needs to have more of a big girl schedule for eating. Let me know if anyone has any thoughts on this. GOOD OR BAD. Also it was gorgeous here today, so we spent a good hour outside. Bella did great. No puking!! She really seemed to just love being outside. I am ready for more days like today.
Let me know what you all think of the new layout. Also I will let everyone know what we find out at cardiology tomorrow.

The Newlyweds

Bella in one of her new outfits from my shopping trip. Her shirts says "Born a Princess"
Aunt Erin, Maddy and Abby. Goofy Girls
Bella in her CMH shirt. She got this shirt after her first heart cath. She was only 5# then and I thought she would NEVER fit in it. Well now she does!!


Well on Monday the 17th, my sister did it!! She got married!! It was a really small ceremony with only 8 of us in attendance. We then went out to eat afterwards and now the couple is spending a lovely honeymoon in Branson. So I have been the only nurse since last Friday!! It is okay though I am just really tired. I am ready for my sister to come back. I think she is coming back tomorrow.


Bella continues to battle the puking. She is having most of her trouble in the late afternoons and evenings. I don't know what this has to do with anything. She weighed 8.8K when we got home and now she is down to 8.5K. So not a huge weight loss but it is some. She was up to 21# before surgery and now at 8.5K that is 18.7#. So all in all, she has lost some weight but a lot of it was water weight before surgery. She is currently on lasix and diuril which are two different diuretics. I just hope we can figure out why she is puking. I don't know if we ever will.

Madison has turned into quite the little "sassy pants" She mouths off about everything and doesn't mind at all!! I remember this phase with Abby, but I don't remember it being that bad. I guess because I had less kids then!!

We have all had the stomach virus at my house. It knocked Matt and I down for two days each. It was really yucky stuff. I think when Bella was really puking like crazy, she had the virus also. So who knows. Well I have to go finish getting dinner ready.
Until Later

We are adding on

Well we finally heard back from the bank but we are getting the loan to add on to the house. So we are going to be adding two bedroom and a nice sized covered porch. We will also be putting a storage area somewhere out there. Also we are going to finally be able to finish my mom and dad's apartment in the garage. It will be nice for them to get their bathroom and kitchen finished. I can't tell you what troopers they have been in all of this. They moved into the garage without it even being finished because we didn't have the money at the time. So I am so excited to finally be able to get it done for them. They are going to be staying for probably another two years, so I want to make in comfy for them. So mom and dad I just wanted to let you know that I love you and I appreciate EVERYTHING you have done for us.
Now on to little Miss Bella. She has a puking problem right now. I am not really sure what is going on with her. If I was going to guess, I would guess it is the potassium they have her on. It seems like she throws up every time she gets it. She also seems to be having some more reflux than usual. I don't know if this is normal post op open heart. So I am going to call Dr. Gratny on Monday to throw around some ideas as to why she is puking. We have been replacing anything she throws up with pedialyte because I am so scared of her getting dehydrated. Now that I am thinking about it, she also seems to do this when she is teething. She has between 6 to 8 teeth coming in. Poor baby, she is cutting them all of once. So it could be a great number of things. If anyone has any ideas let me know. Other than that, she is doing pretty good.
We found out some exciting news that little Ava is off the vent and is doing really well. Amy finally got to hold her precious baby again. She still has a long road so please continue to pray.

First Week Home

So far the first week has been very busy. I have decided to do all of my spring cleaning. I have also been working in the yard. It was so beautiful here today that we took Bella out for a walk. She puked!! I don't know if it was the bumpy ride in the stroller or what. So we only went about a mile all together. She is cutting teeth like crazy. She is not really that cranky, you can just tell she is not feeling that great and that her teeth are bothering her. Otherwise, life is good. Please continue to remember Ava and Katherine in your prayers.

More New Tricks

We have been working on gestures with Bella. So anytime I go to pick her up, I say "up" and raise her arms. Well today, she started raising her arms on her own when I would say "up". She also grins from ear to ear when I say "up" because she knows I am going to pick her up. She got two new teeth today. I was trying to get her to show them to my mom so I said Bella say "AHH" and then I opened my mouth. Well, she mimicked me!! I thought it was a fluke, but when I asked her to do it again she did. I am just so amazed at how fast she is pushing forward.

WAY TO GO BELLA!! MOMMY IS SO PROUD OF YOU!!

My Baby is Sitting Up!!

Bella in her new big girl car seat. She obviously likes it very much. You could just tell she thought she was "big stuff" while in her new seat.
Ready to go. This is our last few moments in Room 4 in the PICU at CMH. It took us about 30 minutes to go around the entire unit and tell everyone bye. It is bitter sweet when we go home. We love so many people in KC.
Bella at home today watching TV with Madison. It was the first time we put her in front of the TV, and she actually watched it. It was really cute!!

Another thing she also did today, was I sat her up and then I thought I would just let go of her and see if she could sit on her own. Well, she did and then she just kept doing it. She can't get to a sitting position by herself yet, but if I put her there, she would sit!! I can't tell you how excited I was about it. The schwan's man came by the house today and he even noticed how much more alert she is now. I guess that is really something if she schwan's man notices. So all is good. We are waiting for warm weather so we can take her out. Mom and I are going shopping tomorrow for summer clothes for the girls. It is never too early to start!!

LOVE TO ALL

Sorry For the Delay in Posting

It has been very busy around here. I have been training my sis to be our new day nurse. Also we have been spending lots of time with Abby and Maddy. Bella is doing great. She is back to sleeping at night!! The first night we were home, I was up most of the night just worried. I slept a little better last night. She is still weak from surgery but is getting better everyday. I have not been pushing her too hard with PT and OT stuff yet. I figure by next week, she should be ready to start working on gross and fine motor skills. We are still working on signing for her. I am teaching her mommy and daddy. We are also teaching Abby and Maddy to sign. So not too much to report. I am exhausted, so I will not be posting any photos today. I promise that I will try to get to it tomorrow.
I know I keep saying it, but really thank you!! thank you!! for all of your support to everyone.

We Are Home!!

Okay just a quick update. We arrived home at 3:30 p.m. today. We are so excited to be here. As you can imagine after three weeks in KC I am still unpacking. I thought I would take a really quick break to post and let everyone know we made it home safely. Bella is doing great. I have pics of her leaving the hospital that I will post when I get a chance. Okay, back to unpacking!! I can't believe how much stuff we have!!
Thanks again for all of the prayers. It has proven time and time again that the Lord is listening and answering. Please remember to keep Ava and Katherine in your prayers as well.

Tomorrow

I almost hate to say, because I don't want to jink us, but we are suppose to go home tomorrow. She got her staples out of her neck and is getting her central line out this afternoon. She is alert and playful. She smiles all of the time. Cardiology came to see her and said she looks better than they have ever seen her. The flow across the homograft valve (the new piece they put in) is great. She has very minimal leakage. Everything seem to be doing what it is suppose to. Her cardiologist said he would like for us to work on getting her off the vent over the summer. Then once she is off the vent, they will try taking her off the Viagra. She seems to be stronger than I have seen her since getting her trach. She has never really been able to make noise over her trach before. She could if her trach ties were loose and she wasn't getting good volumes. But now, she is making all kinds of noises around her trach even with the trach ties tight. So that is a good sign that she has more strength. I can't even begin to describe how much she has improved over the weekend or for that matter how much better she is now. I can't remember her looking so healthy. The Lord is good. He has answered our prayers again and again. Isabella has probably needed repaired for some time now but was unable to go through surgery until now. God has is perfect timing in everything. Janie our chaplain has shared this with us and I would like to share it with you. So I leave you with this

IN HIS TIME

In his time, In his time;

He makes all things beautiful in His time.

Lord, please show me every day

As Your're teaching me your way,

That You do just what You say

In Your time.

In Your time, in Your time;

You make all things beautiful in Your time.

Lord, my life to You I bring;

May each song I have to sing

Be to You a lovely thing

In Your time.

Diane Ball

Tuesday???

Abby and Madison at Fritz's. Madison didn't quite figure out how to wear the conductor's hat!!

Outside enjoying the fountains.
Notice something missing on Abby's face in all the photos?? Yes, finally some pics of Abby and the missing tooth. She is so proud to have lost her first tooth!!



Well it looks like it will maybe be Tuesday when we go home. She still has staples in her neck. So that is pretty much the hold up now. She has an appt with her vent Dr. tomorrow so we can get that out of the way. The girls have now come and gone. I miss them already. They were so good and sweet. I really did not want them to go home. I took them shopping today. They wanted to buy swimsuits, so they each got a new swimsuit. We even picked one out for Bella so she can sit in the little kiddie pool with mommy. We went over to Crown Center yesterday evening and walked around. We also spent some time in the park over by the hospital. So it was a good trip. I think the girls had lots of fun. Bella is doing so good. She is breathing easy. She is off oxygen. She is just smiley and happy. She doesn't seem to have anymore pain. I think she is pretty much recovered from surgery. Like I said, she needs to get her staples out and she also needs to get out her central line. They should take out the central line tomorrow and then the staples will come out either tomorrow or on Tuesday morning. They are leaning towards Tuesday morning. Since the staples are in her neck and because she has trach ties, Dr. Lofland wants to make sure her neck is really really healed before they come out. We would not want that area busting open!! So other than having to wait a few more days, we are holding up great.
Here is a short but sweet video of Bella just being Bella. She has been going crazy with her kick-n-play, but everytime I try to catch her on tape she quicks kicking. I guess she is a little camera shy. I know however there are lots of you from home who miss her like crazy so here is a little glimpse of her. Notice how great she looks!!