Weblog
Monday, 30 April 2012
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Seriously!!!
I spent two hours earlier creating the below post for the site to not include all the pictures I so painstakingly put in and captions below! Frustrated beyond what i can handle! I will try to fix it! Not sure how but it will be done!!! =)
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Spring 2012
A lot of activity has happened since February! Let's begin with Ball State Dance Marathon...We always tell our story at IU but this year we added Ball State to the mix! The kids had a blast! Of course bounce house and lots of personal attention! =) Molly always has a sorority that sponsors her....they were absolutely amazing!
They even made shirts with her name on it and the reason they were dancing.
This is Amy! Molly loves her!!!!
Molly doing her thing with the tutu they sorority made her ! =)
They had a crazy sock day at school and this is what Molly came up with!!!!! =)
I tend to find hearts in everything we do...the kids help me find them! This one was in my red pepper. =) Fun huh!
Jonah pointed this one out to me in the plants we are growing!!! =)
We built a new sandbox! The kids love it!
Jonah had to retire yet another pair of cowboy boots!!!! We can't pass them along he wears them out! =)
Molly used the rubber gloves to make talons for her feet! She was the scorceress from HeMan!!! =)
Jonah is fixing the lawnmower! Bulb syringe and a little water can fix anything! =)
The kids and I went downtown when the monster truck show was in town! They got to see one of the trucks up close and personal! Jonah was supposed to go to the show but got really sick!!! Poor boy, but Molly went instead. She loved every minute of it! =)
Grandpa and the grandkids!!! =)
Grandpa and Molly at Easter! =) Look at that gorgeous neck! =)
Look they can work together! =) She tells him where to put it and he does all the work! That is how she does any work! =)
Rodeo Molly! The kindergarten had a Rodeo for the ABC's! Every letter represented something in a rodeo! =) Molly's letter was L for lame horse. Her horse had to stamp it's foot to get the rock out! =) She did a great job! =)
Daddy and Jonah about to enjoy the show!
When we say Molly is tiny....we are serious! Look at the craziness! =) Cracks me up! =)
Molly and Jonah both milked a cow at the Spring Festival at Purdue University a couple of weeks ago! Jonah walked into the tent and told us " I am going to milk that cow! =) cracks me up! He was serious....he wasn't leaving until he was finished!
That same tent had ducks and chicks to hold!!! They loved the experience!
Next came Molly favorite part! She was able to HOLD bugs that are not from around here!!! =) She was so excited and she talked about it all week!!!! =)
Our future "bugologist"! =)I hope you enjoy our many adventure!!! =)
Monday, 13 February 2012
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Just moving right along!
Wow...I didn't realize it has been over 6 months since I updated this site! I know there are many many people who have prayed for Molly & our family. I am soooo sorry that I haven't kept you informed! =) Life has been very full and exciting!
These were all of Molly's meds....she hasn't had that set-up since she was in the NICU! It was very hard to see and go through again. The above picture was Molly while she was sedated. Yes...that is her Baby Fox watching over her. I took these pics so that I could go back and remember...just like all the NICU pics....how far we have come! How much of a true miracle we have!!!! =) Molly's neck has healed nicely. Molly had a rough summer as far as the narcotics that were used to keep her sedated. She had to have them to keep her from pulling out the breathing tube and ruining her new airway. Molly had to relearn to walk, talk, eat, go to the bathroom and so much more. Mostly b/c of the narcotics and the meds that were used to help her with her addiction to them. She doesn't remember any of it and most of her summer, but as a mom....that is better. It would be much harder to answer questions from her that reference "why we did that to her?" Sometimes as a mom you ask yourself these questions. You know that the easiest thing for your child would be to do nothing and just leave things as they are.... On the other hand, you know in your heart... that your child will have a much better and fulfilling life if you go down that rough road for a little bit. It is never easy to see your child suffer and struggle, but in the end you know they will be a better person. =) Having Molly go through that surgery was one of the toughest things I have gone through. I think, in part, it was because my mom has always been part of Molly's hospitalizations. She would have been there for every bit of the surgery & recovery. Instead we lost mom last February and this procedure was on our own. There was no way Joe could take that much time off work, so I stayed at the hospital and Ronald McDonald House by myself. Joe stayed at home and took care of Jonah and working.
Joe, Jonah and my dad all came to visit... They went to the Cincinnati Zoo. Of course it was one of the hottest days of their summer. This picture is ironic because Jonah was sitting on top of an alligator. Almost 4 years ago, Molly sat on that same alligator! We have the same pictures of Molly at that same age!! If I could find it I would post it! =) I love it!The summer went on and I took the kids to the Indiana State Fair. We went on one of the adventures for the kids....they look so cute!
Jonah's smile always cracks me up! We had many adventures!!! Look at that beautiful neck!! =) 
Molly's absolute favorite things pink & tractors...they were together!!! =)Molly went to kindergarten this year!! That was very very rough for ME... =) I know that is what she needed to do, but after all the events this summer it was hard to accept. There were a lot of changes that took place with school too...new school, new bus driver, no nurse, new teacher, new friends.....too much for me to handle....that meant crying after putting her on the bus for the first two weeks. Yes I bawled! =) My mind kept going to one thought..."how could I do this TO her?" Why is it that I feel this way? I know she had to go through these changes and they are part of growing up, but she has already been through so much, why must she have to deal with so much more. She is truly an amazing kid.....the third day of school...she asked me, "Who is going to go to school with me and take care of me?" I had to tell Molly she was going to have to do this one on her own. I felt horrible. She understood. We have had many mornings where it wasn't pretty when I put her on the bus, but she always says she loves it!
Jonah went to preschool this year.
Do you like the shiner he gave himself? He ran into the end of the couch and cut his eye!!! =) The night before the first day!!!!!
This is the NICU crew and siblings! It is crazy to think that 6 years ago we were still in the NICU. These are our NICU buddies! This is the NICU reunion. We love and cherish these families. When you have kids you imagine one life....then another life becomes what you are living. These people understand that feeling and that journey. =) 
We had a yard sale and only got $6 after the advertising....plus it rained! Awful....at least I got a good pic of Joe and the kids! Molly looks soooo old!
My two crazy kids! =)
The past two Octobers we have gone with friends to Trick-or-Treat. Molly & Jonah love to get candy with Delaney! =)Every year we go to Indiana University.....we go to an event called Dance Marathon. The kids love it and they ask Joe to sing. Jonah loves to pretend to sing and Molly actually sang with Daddy!
This is one of my favorite pics of Molly & I! =)
This rainbow seemed to be right across the road!!!! It was amazing and completely across the sky!
Molly made her own from her "model"The family went outside to play in the one and only snow we have had all year! Molly likes to go off on her own and Jonah built a snowman with Joe! =)
Molly & Jonah decided they were going to a western movie....they took our ticket stubs and sat down in their cowboy garb! =-)
Molly had a blast at her first cheerleading clinic!!!! =) She even did a bow at the end of the song. She hung out with a girl from our church named Annie and her group leader named...Molly! =)
Our family is always up to something.....they kids keep us on our toes! Again...sorry it has been so long since I updated...hopefully it won't be so long next time!
Tuesday, 14 June 2011
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Day 14...
Hey, Good news! Last night we were moved from the ICU to the Complex Airway Unit. It is good to see familiar faces! The nurses all recognize Molly from our previous visits. It is like coming home. =-)
Molly had a very good night. She finally slept well after getting her fluids turned off! The i.v. pump kept beeping. Well, her PIC line isn't flushing well, so they turned off her fluids. She has been getting her home food since last night at 5! So far, she hasn't thrown up. Yeah, considering she threw up 5 times on Sunday. We aren't sure exactly why she was getting sick. She has had a lot of mucus so that might be part of it but she also doesn't tolerate just formula either. She is getting 2 ounces every 2 hours and we will begin to spread them out so that she will be back to her 8 ounces three times a day. Something to work on!
This morning her dr. came in and told us they are discharging us TODAY!!!!! That's right today. We will go to the RMH for a day or two and then come home. She is now off of oxygen and they are happy with her airway progress. Everything else will take some time. She hasn't walked for almost two weeks, so they are going to help us with PT and OT.. Even when we get home, we will be working on some of these things. Molly's PIC line will come out and then we will get her ready to go! Relaxing and hanging out sounds good to me! Just the two of us!
I will update on facebook b/c this site is blocked at the house. Not sure why? Yeah God for timing!
Monday, 13 June 2011
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Day 13...
Alright....we went down to the OR for another look at Molly's airway. Dr. Cotton came back and said molly's airway looks amazing. He said she can go home as soon as we get the withdraw under control and off of oxygen. We will come back in 3 weeks for another look, but otherwise he is very please with her progress. Not sure how long it will take for her withdraw...much better today b/c she was her silly self. She does repeat a lot of what we say, where she didn't do that before. I was told that the meds do that to a lot of the kids. As the drugs leave her system she won't do that anymore. We need her to eat without throwing up. I went back to the RMH last night and made food like at home. We will try that later today after she wakes up more. We want her body to be able to digest and not just let the food sit there! =)
O.k., I understand something a little better now...Someone made the comment that the former Preemies usually need more sedation that other kids. That is because they have gotten these drugs before and have a higher tolerance for them. That being said, I thought about that last night. Molly was really sick at 2 weeks old and got lots of meds. I remember them saying something about weaning her off of the morphine. Molly had received these meds before, so her tolerance was much higher. That was why she required more meds to knock her out while she was intubated. It all makes sense now. I don't like that they needed to use that much, but I now see why... That you Lord for revealing that to me! We all ask why sometimes and we don't always get the answer. Thank you for answer my ques! =)
We are getting there! Molly made the patient attendant laugh last night! She was trying to make her laugh. It was cute. She is in there, just not always visible. She is getting through slowly but surely! =)
Sunday, 12 June 2011
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Day 12...
Today, Molly is more alert. I got here just in time for rounds. I am glad I did...They said they are not comfortable sending Molly to the complex airway yet. The doctor said that Molly's withdraws from the drugs makes it more difficult for them to send her yet. I agree with that! They have taken her off a sleeping medicine that helped her relax so that she can get her days and nights back! She seems less confused by doing that. She and I watched Tangled earlier & she was trying, in her drunken voice, to sing with some of the songs. She mostly repeated what they were saying. She was also trying to dance while laying down. That is entertaining to watch. =)
Molly has a scope tomorrow in the OR...probably in the afternoon...they like to do that periodically to check the airway's healing. They were pleased last Wed., so hopefully it will cont. I am pretty sure they will be happy. She seems to be breathing on her own and very comfortable. She is now down to an 1/8 of a liter of oxygen! That is just a puff! The one thing I have noticed is that she has thrown up a couple of times the past 24 hours. I noticed it was a lot of mucus. I think her body is trying to get used to now swallowing the secretions that you and I usually swallow without thinking. Used to, they would be suction out of her trach or lately some came out her stoma. =) She called them trach buggars! She seems comfortable! I think her stuffed animals are more upset by her throwing up than she is......they keep swimming in the washer. If they didn't know how to swim before, they do now! =-)
I wanted to write a couple of the things Molly has said lately b/c they show her personality and they are funny. =) I told you some yesterday, but here are a couple more. "Who went poo poo?, That's not very nice., Butt Butt"...that one is b/c she and Jonah think it is funny to say that word! =) The next one helps me to know she is really in there! Molly is wearing a diaper b/c obviously she can't go in a potty. Well, she will tell us she has to go potty & we tell her she has the diaper on and that she can go in the diaper. Well the nurse told her that last night & molly's response was, "You go in your diaper." =)
Good times!
Saturday, 11 June 2011
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Day 11...pt. 2
Pretty uneventful day! yeah!!! Molly goes in and out of comprehending. She will see me and really be excited about my being there....two seconds later, she acts like she didn't see me there before. She may also go through spouts of knowing what she is saying & then grabbing for words. For example, (i know it shouldn't be funny, but it is..) she will toot and then look around the room and say, "who did that?...that stinks!", while grabbing her nose. =) No one may be in the room and she starts hollaring, "that is my snowy!" I have written them all down so I can share more later!
I went back to the RMH to get some lunch and laundry done. I had only one shirt left! They are tearing up the carpet right outside my door and putting in wood laminant. Well, so far, we are on day 2 with no end in sight!. Good thing I haven't stayed there much b/c that would be a nightmare. I had to walk over all kinds of stuff to get to my room. Quite a chore with my clumsiness and a laundry basket in my arms! =) Of course, I tripped! Finally, got all my chores done...except for cleaning the room and bathroom. As I was leaving....realized that my door wasn't shutting. Yeah, the flooring is too high for the door to shut! =) The desk promised me that they would make sure the door was actually shut when the guys are gone. I don't plan to go back so we will see if all is still there! =)
While I was gone, apparently molly threw up and was very agitated, but nothing out of the ordinary for right now. They helped Molly get cleaned up, a new bed, redid her hair, got her comfy and she has been asleep ever since. She had been sleeping very interrupted. Sleep for 2 min....just long enough for me to walk away from her bed and then awake again. Very crazy for everyone....someone has to sit beside her all the time. Now that she is not on her meds she wakes up and tries to sit up by herself..not good! -
Day 11...
Wow...long night, but well worth it! They have weaned off of the high flow nasal canula to regular canula & almost to room air! Once she is there for a while they will take the canula off! We just don't want her to get too tuckered out. Go Molly! Almost off the Dex...Their goal last night at rounds was to get as many "things" off of her as possible....the more things attached the more agitated she is.
We had a full conversation with Molly! She responded to our questions and so much more. She asked for a drink....she said "spite, please" wow! =) She sat up and took two drinks. I am not sure she was ready for how it felt but it went down o.k. I am so glad she is back. Getting hit with arm boards isn't fun especially when you are tired & not awake...my skills for dodging them are not as good.
Here is a run down of her thoughts...yes they are random but that is the way she has been...
Can we go to IU? (That's for you Brielle)
Piggy (she means b/c we are in Cincy, she want to see the piggy from the hotel)
Snowy...she told both of the stuffed animals she loved them and had me take the arm boards off to hug them
Baby Fox
Playroom w/ a big smile...I told her she had to be fully awake and feeling better..her response "I am fully awake" in a voice that sounded drunk! =-)
She leaned over and told me she loved me and motioned to give me a kiss!
She asked where she was...(still on some meds so that is normal)
I told her that she had her airway surgery and her stoma was closed...she gasped! =)
I told her that her neck looked just like Mommy's... another gasp and a great big smile!
She had me put the arm boards back on, she said she felt safer even though she couldn't scratch her nose! =-)
We told her to take a drink for Jonah....she shook her head and said no. =) So she took one for Daddy.
I guess one of the meds they give can cause hallucinations...(Molly only got this on two occasions)...great that is just what we want to give to kids right?...anyway, last night the nurse said she was charting (I went to the RMH to get some dinner) she turned around and Molly was tracing something in the air above her. She grabbed it and then went back to sleep! =-) I wonder what she was really grabbing at? Who knows, but I am glad she achieved her goal!
Thought I would share and give you all a good start to your day!
Friday, 10 June 2011
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Day 10...pt. 2
8pm
Molly is sleeping well. She still has her bouts with the crazys but they are less and less. The nurse & I have a theory that she doesn't like the methedone they are giving her to get rid of her withdraws. She gets really crazy 45 min after they give it to her. Trying it one more time and if that happens again we are getting rid of the stuff...according to me! Let's find something else that will work. I know it is given to all addicts coming off of their drugs, but if it isn't working, don't use it!!
My other belief is that these nurses are angels! They should get paid more than some doctors! They hold patients down, stress without showing it, love, try to figure out what might be going on & be bold enough to tell a doctor, hug, & help these kids without anything more than a paycheck! You go girls at PICU B5! =)
I went back to the RMH to get dinner and some clothes to sleep in. It started pouring while I was over there! Molly had wanted her Lamby from the car! The rain slowed down, so I went to get him. I was trying not to get drenched, so I climbed into the back of the car & shut the door, got what I needed and tried to climb back out....well apparently I had engaged the child safety locks on the back seat doors......I couldn't get out from there. I had to climb into the front seats to actually get out! I know...to be a fly on the wall or someone watching from somewhere else! It was comical! What we will do for our kids! =)
I will update in the morning....I am sleeping here tonight, so I am going to get some rest. I have a feeling these bouts with the crazys will cont. on & off all night! =) Molly is now to a point where she can comprehend what I am saying, so my being here makes it more soothing for her. Yeah! We are getting there! -
Day 10...
As you know by now, Molly can be a crazy woman when she wants to be. =) Well, after much prodding last night, the nurses got me to go back to the RMH to sleep. They told me they would hug her tight for me just like she wanted. They even fought over who was going to get to hug her. I did leave and rested well. When I got here this morning, they were rounding.....everybody gettin' together to talk about Molly & all her "stuff." I noticed that she was in a crib. She had been in a big girl bed that I could lay in with her. Apparently, Molly decided in the middle of the night that she was going to get out of bed, or at least try. She had her feet on the floor and was laying on the bed sleeping. Our biggest fear is that she will pull out her PICC line. Getting out of the on the wrong side will do that very quickly. Plus with all those meds....she hasn't used her legs in a long time. They are very weak. They've got her in a metal crib with the plastic tops. She won't be getting out of that thing! They had to put an arm protector on her left arm b/c she kept pulling out her nasal canula! She also can't reach her other arm that way. I just want my little girl back and that may be a couple of days. I love it when they say...it will be a rough couple of days, well we have already had a week like that! They have to keep going up and down on meds because she has spouts of craziness. I guess that is "normal"...It breaks my heart when molly is saying over and over "Please, make it stop!" I can only say....I am trying and it will be better in a couple of days! aahhh!!!
Molly is still on sedatives to help with the withdraws, antibiotics for the two types of infections she has, & now has diarreaha. They think that is from the antibiotics and the withdraws! aahhh! Poor girl. When we stand next to her, her belly just cont. to rumble! It can't be comfortable. No wonder. She feels so awful. Her body is all out of whack, just because we had to mess with her airway!
The upside to all of this is that Molly has been doing very well regarding her airway! They are very pleased b/c she has been able to stay on and wean slowly down on the high pressure nasal canula. I met someone through a facebook site. A "place" for parents of kids with vents and trachs. There is a mom here at Cincy who's child was supposed to have an airway reconstruction, stoma closed and go home without a trach. Well, the little girl was extubated once and didn't handle it off the vent. They have now tried 3 times and she still hasn't done well without her trach. They had to go back to surgery yesterday and put her trach back in. I can't even imagine what that family is feeling right now. To come here and expect to go home without a trach was a dream...lots of thoughts and expectations. Now they are going home with the same stuff they came with, only a lot of memories of craziness inbetween. It has to be heartbreaking to see her daughter go through all of that and nothing changed from when they entered. They had told us in the beginning (3yrs ago) that everyone has a different story and every kid handles the airway reconstruction differently. Molly has always been a fighter, so we knew she would be strong. We would have taken anything we were given no matter what. Having said that, when things don't go as we plan or expect, sometimes it takes us a little while to comprehend our circumstances and acclimate to them. All of us have dreams for our kids and hopes that they can do something bigger and if things change, we have to regroup and start thinking differently. That kind of goes back to when they told us Molly would get a trach. I had seen kids with trachs, but most of them were nonfunctioning. I had never seen a child that was running around and talking and being a "typical" kid. God truly showed us that that wouldn't be the case with Molly. There was a little girl who had a trach in the hallway during the surgery to put in her trach. The first thing she did was come up to me and say "HI!" I was overwhelmed with emotion because she was a happy, healthy 3 year old! Wow....what a picture that was and sign of hope to come. Now I am here with my bigger girl and she is breathing like you and I do! What a journey we have been on!
More to come later!
mollymiracle
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- Name: Myra
- Gender: Female
- Member Since: 6/10/2007
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