Sunday update

James came back in town today so now he has hospital duty and I get to come back to get a few things done (like updated my blog). Autumn will get to move to Baylor in the morning sometime so we are super excited about that. It is kind of sad to leave Children's after being there for 10 weeks and getting to know a lot of the staff and people there. They are also decorating for Christmas and it looks so beautiful there right now.

Autumn is still doing good. We have figured out the vent settings that she likes during the day and night so we are not having any more apnea episodes and rarely have desats. She has a horrible diaper rash again because she goes potty none stop and we have tried everything to try and get it better. She may not have too much control of her bowels and just goes poop all the time. Poor baby. Well, we also do not get to feed her with a bottle anymore. I discovered when I was feeding her on Saturday that the milk was coming out of her trach hole. That means she is not swallowing correctly and it is going down the wrong pipe. :) They said she would of been an exception if she was eating a bottle so soon because it takes most trach kids awhile to learn how to suck properly so we are not disappointed by it. It is much easier to just hook her feeds up and leave it alone. :) Well, I will be getting up early tomorrow to go the Children's and wait for them to transport Autumn to her new home--I will post tomorrow about how it all went.

Also, on Saturday, December 6th my mom will be looking for some help to get our house all nice and clean for Autumn's return home. So, if anyone wants to go over and pitch in then we would really appreciate the help. :) I think she will be there by 9:00am for anyone who wants to join in. I know it does not sound like a fun way to spend a Saturday so hopefully a lot of people will show up and it will get done quickly. I hate asking for the help but since I won't be able to get there to do it myself before Autumn comes home I don't mind asking help so my mom will not be doing it all by herself. She has done WAY too much already and I can't wait to get home to give her a break. :)

Friday update

Hope everyone reading this had a wonderful and blessed Thanksgiving. Our family was in 4 different places-Madison with her daddy, James at home alone, Gage at the my brother's with my parents, and Autumn and I in the hospital. Gage and my family came to bring me my thanksgiving dinner and it was wonderful. I was able to feed Autumn two bottles yesterday. She did great and did not desat at all so they wrote orders to feed her 2 a day. They said that she is going good for just getting a trach and willing to take something by mouth. They also moved her oxygen to 28% at night so she did not have any desats last night and she sits at 21% during the day and does fine. Now that I have spent 2 nights with Autumn I see that she is a wonderful baby. She only fusses during the day if she is wet or hungry and in between she just looks around or takes short cap naps. She is already sleeping ALL night long. She went to bed at 8pm last night and slept until 7:30am. Also, when she wakes up she does not even cry--she just lays there looking around. Even when I get up at night and change her diapers she sleeps through it all. I just hope she continues to be such a laid back and content baby. I am really bonding with her and falling head over heels in love with her. Well, a friend told me that her sister works at Baylor Childrens's and on our intake sheets there was a comment that we are a great family, eager to learn, and that they are going to get us home as soon as possible. I am glad they are warned that we are not staying long. HA! They are already allowing me to change trach ties without a nurse present and we are suctioning on our own, bathing, and moving her in and out of bed and now feeding her without help. YEA! Well, I am only able to update when the library is open here at the hospital and when my family comes to relieve me from the room so you may not hear from me the rest of the weekend. Have a blessed weekend.

new date

Well, no surprise there is a new moving date to Baylor but it is a good date change this time. We will be going Monday now instead of Wednesday if Autumn continues to do well and not get sick. Her speech therapist gave her a bottle today and she is getting a suck/swallow test done tomorrow. We saw her get her trach changed today and Sunday they are going to let us do it ourselves so when we get to Baylor we can show them we know how to do it. Well, it is late so that is all the new info I have for now. Goodnight.

Another step towards home

So, we found out yesterday that we will be going to the Baylor house on the 3rd of December. We were wanting to get there this week but they do not have any opening until next week. So, James will go home one more time to work and then the next time he comes back to Dallas it will be to stay until we are taking her home to Midland. YEA! I really think we should be able to get out in a week since we are already doing and being taught so much at Children's. We'll see.

Autumn is still doing her normal desats every once in awhile but she either comes up on her own or we just turn up her oxygen a little to help her. They are now giving her acid reflux medicine and last night she had a tummy ache so they are a little medicine for it. She received her first immunization shots yesterday but they gave her the numbing thing first so she did not cry during all 5 shots. She is still doing breathing treatments and getting some antibiotics for the infection. So, all is well around here. I think one of our hardest challenges is trying to figure out what it wrong with her when she cries. With Madison and Gage I could hear the difference in their cries if they were wet, hungry, or in pain and not being able to hear her cry is going to be challenging for us. I guess we will have to learn body language now. She is also going to be so much more exhausting than a normal baby since she has to be in eye sight at all times and just moving her from one place to the next takes time. Not to also count all the therapy we have to work with her everyday and just all the other medical care she needs. I am now seeing why having a nurse at home is going to be really helpful so that James and I will be able to have somewhat of a break when needed. I am ready though to take on all the challenges and I keep praying she will progress much faster than the doctors expect. They are already discussing to try getting her to nipple feed which the dr. did not think would be possible for at least 2 months. Well, better get ready to head to the hospital and relieve daddy.

Monday update

Yesterday Autumn had a pretty good day. She has been having a few desats and had to be bagged a couple of times to come back up. They moved her oxygen up just a little. They think she may just need a bigger trach size so they may give her a larger one when they change it again. James and I are still practicing changing the ties and doing her feeds. We never get the trach ties tight enough though because we always feel like we are going to choke her but we are learning it's okay to get them REALLY tight. It takes us about an hour to do the bath and tie changes. :) She is usually pretty awake all day long and just takes a few cat naps and then she sleeps really good at night. She weighs 8 lbs. 8 oz. now. Getting big! They are giving her breathing treatments with an antibiotic until the bacteria goes away. She is also getting her 2 month shots today as well as the RSV shot. We have to get it every 28 days for 5 months and may have to travel to get them since doctors usually don't keep them on hand since they cost $1,600 per shot!!! They are highly recommending we get it since kids on vents are more likely to get RSV and that is the last thing Autumn needs. :) We still don't know when we will get to go to the Baylor house--I'm trying to just wait patiently but kind of need to know soon so we can decide if James will be flying back Wednesday to work or staying here and I'm really eager to get home ASAP. Keep praying things will move along quickly so we can be home.

Hands on

So, James and I finally felt like parents to Autumn today. We were able to bathe her together and then change the trach ties all by ourselves (with the nurses watching). James even learned how to suction her today. So, we are all ready to go home now--HA! She did have an apnea spell while I was leaning her forward and James was tightening the trach ties but she was able to come up again all by herself. We are so proud of her. ;) The nurses commented on how calm we were. James was the one who actually saw that she was turning blue and desatting. What a great daddy! I guess we are use to how she does so it does not scare us.

Madison and Gage also got their flu shots today--they have this new thing they give to numb the site first and then give the shot so neither one of the kids felt the shot. They both cried a little before the shot with the scared anticipation and now Madison is crying because she is sore from the shot so we still are hearing the tears before and after-just not during. :) We had a good day of the whole family visiting Autumn and we all took turns holding her.

New Room

We moved to our new room yesterday. It is so nice having a room to ourselves and getting to be more hands on with Autumn. The nurse and I gave Autumn a really good bath yesterday and she loved it. She relaxed through the whole thing but did not like when we changed her trach ties out. They even brought her a mobile and bouncer for her to sit in. We have not tested out the bouncer yet. The kids, daddy, and nana came to visit her and sissy was able to hold her. She may have an infection in her stoma (the opening of her neck). They did a culture and gave her an antibiotic mist through the trach because they saw some bacteria under the microscope and are waiting to see if there will be any growth on the culture. If so, then they will have to give her IV antibiotics. I was also able to dress Autumn yesterday and she looks so precious in her clothes. She still is able to wear newborn clothes even though she is already 2 months old today. I am not sure how long we will have to stay at Children's--they really will not be teaching us here but can show us how they do things and we can start doing them ourselves. I hope if they see she is doing fine that we can leave in a week to the Baylor House but we will have to see. I am determined to get home for Christmas--Autumn just has to cooperate. There are new pictures of Autumn with clothes-go look--www.autumn.haleydean.com

We're graduating!!!

So, tomorrow Autumn has reservations at 3:00pm to move to the 7th floor--the pulmonary floor. We will basically be there just to train to learn trach care and make sure Autumn continues to do well on the home ventilator. Once they feel like she's ready and that we are ready we will then go to the Baylor Children's House to continue our training and learn everything about the vent and then once we are confident there we will get to come home. YEA! It is so exciting to see us moving more and more steps towards home. I had to go buy some new sleepers for Autumn today that button in the front so it will be easy access to feed her. All her pj's have zippers on them. It was fun to get to shop for her and tomorrow she will get her first outfit on (the day before she turns 2 months old). :)

It is also a great day because I will get to see Madison and Gage again. I miss them so much!!! I am glad Autumn will be in her own room when they are here so we can all spend more time together as a family. This will be a great Thanksgiving week. I will take pictures over the weekend and get them posted soon.

Can you say overwhelmed??

So, I'm actually not overwhelmed by the trach (just yet). I am overwhelmed but the home ventilator. The thing is big and the tubings are also big. The y-connector that connects the tubes from the trach to the machine is bigger than Autumn's whole chest. Yesterday after they put her on the home vent I wanted to hold her and she was not connected to anything but the machine but they still had to hand Autumn to me and then tape all of the tubes to a pillow so the weight from them would not disconnect them from the trach. Yeah, that is going to be fun trying to hold her at home and letting the kids hold her. I also asked if the portable vent would be smaller-um no-it is the same vent it just comes off the stand and goes into a backback thing. I told Autumn she better really like her room because it does not look like we will be leaving the house except for doctor appointments. I'm still clueless to how I am going to be bathing her and moving her around the house. I thought this trach would give us more freedom to treat her like a normal baby and not have her stuck in a baby bed the whole time. So, I continue to pray that God will help her get off the vent soon. I am also overwhelmed but seeing how different the settings are and now having to learn what every little thing means. So, I told James it looks as though he is going to have to miss 2 weeks of work to be here 24/7 to train with me. I know we don't have much nurse care in Midland and I don't want us to rely on other people to know everything--I want us to be able to understand and know everything so I want him here to learn it all with me and hopefully he will pick up the things I don't understand and explain them to me. HA!

The RT showed me yesterday how to change out her trach ties and clean them which will have to be done once a day. I was not hard at all--it just takes 2 people since one has to keep her still and hold in the trach/vent while the other cleans around the opening and her neck and changes the ties. I was also shown how to clean around her G-button and how to take the connector tube out to clean and how to put it back with milk in. (I don't know how the font just changed-I hit some button and now can't find it again). Anyways, they are going to wean her down from continous feeds so that she can start feeding a bolus every 3 hours instead of eating all day. They said continous feeds are nice at night because you don't have to get up and feed her-so maybe they will keep those. ;) The G-button is also nice because medicine just goes through the tube and no fighting to take it. I want to now get Madison and Gage a button of their own. I think every baby should come with one. :) She is doing great sucking her pacifier already so the speech therapist will start working with her again and she may start getting to learn how to nipple feed again. We figured that would not be possible for awhile so that is why we decided to go ahead and give her the button. The good thing though is that it was done with the trach surgery and when you take it out it just takes hours to close up so I think it was still worth getting so she can get the nasal tube out. Autumn is doing good on the home vent without any desats at all and she is not having to be suctioned much. She looks so different now. After surgery her face was SO swollen and now she has a normal little baby face and does not look so fat and cubby anymore. She's so cute--I can't wait for everyone to see her in person because pictures make her look much more bigger than she really is. She is going to start up occupational and speech therapy again and has still been doing physical therapy. They made her a little splint for her clubbed foot that she wears 3 hours on and off again. I have my meeting today with the doctors so hopefully we will be on a normal floor on Friday. It feels great each day to see we are one step closer to going home.

Trach change

Yesterday Autumn got her first trach change. I was not able to see them do it since they came at like 6am. They said she did well and she did cry but was able to be calmed down with her favorite pacifier (the one sissy got her). Her trach has a small leak but they said that is fine as long as it does not affect her breathing but it sounds like she is snoring the whole time. They moved her oxygen to 21% which is room air and she would desat to about 85 but come right back up by herself. She had another great day yesterday. They did not get a chance to put her on the home vent yesterday since they did not get to us in rounds until 6pm in the evening! It was busy in ICU yesterday. They moved her to full feeds-she is still being fed continuously but they should stop that soon and just give her the amount she needs every 3 hours. She rested most of the day and aunt Jen and I were able to hold her last night. It was so fun cuddling with her and actually being able to kiss her all over her face. I don't think she really liked it though. :) Today the plan is to put her on the home vent and Thursday we have our care meeting at 2:30pm to meet with the pulmonalogist (sp) and so we can talk about graduating her to a new floor. YEA! Her little friend Maggie has been doing so good that they were able to move to a floor yesterday and hope to be home by the weekend. I am so thankful she did not have to go down the same road as Autumn. Everything still looks great and pray we will be in our own room by Friday night when the family comes down.

Raffle tickets

A couple of officers from Midland PD wanted to do something to help us out financially so they are going to raffle off two $250 Visa gift cards and all the proceeds from selling the tickets will then go to help us out. The tickets are $5.00 each so if anyone is interested in buying or selling tickets then just e-mail James and let him know. His e-mail is jameslacy3509@grandecom.net and just put "raffle tickets" in the subject line. I am not sure how long the raffle will be going on but will update as soon as I find out. Thanks guys for wanting to do this for us. We really appreciate it.

So, little miss Autumn is still doing GREAT. No more destas unless she is really mad and cries (which of course is a silent cry). :( Yesterday evening though she had a stomach ache so I was trying to comfort her and get her to sleep but it was not working since all I can do is stand there giving her the pacifier and sing to her. They gave her some pain meds though in hopes that it would help and that she would be able to rest. I called around 10:30pm last night and she was still awake but not crying anymore and I tried calling this morning but no answer so I am not sure if she slept well last night or not. I hope by the time I get to the hospital her trach will be changed and that I will be able to hold her. They are also putting her on the home vent today--it is a lot bigger than I thought it was going to be. It will be fun trying to roll it around with her at home. Hmmm......I guess I will get good at moving her and all her machines around though. At least the new hardwood floors will help it roll better. :)

I also wanted to say that I am so proud of Madison for getting all A's on her report card. She went from failing math at the 3 weeks to passing with a 90. Way to go!!! She also got the character trait of the month which is courage--she definitely deserves that one for all she has been through this year. They will have a luncheon for her at school on Thursday which I will have to miss---so sad. I am excited though to have all 3 of my kids together for Thanksgiving week. Madison and Gage have not seen her with the trach yet and have not been able to hold her since she was 2 weeks old so I am excited they will get to love on her next week.

Sunday morning

Autumn had a great day yesterday. I think this trach surgery has really helped her with her breathing. While we were there she only desatted twice into the 80's but that was because she needed to be suctioned. She also does not desat when they suction her which is new for her. The RT said her setting look great for just getting out of surgery and having a trach put in. Everyone sees how much better she is looking. Yesterday she was pretty alert all afternoon and we found a pacifier that she can actually keep in her mouth for a little while before it pops out. She looks so much more like a normal little baby and it is killing me that I can not hold her right now. They started her feeds back yesterday and decreased her pain meds. We are aiming to have her on full feeds and no pain meds by the end of Monday. YEA! Tuesday they will change her trach and take out the sutures from the trach and G-button. Hopefully we can then figure out which vent to put her on and what settings so we can move to another floor by the end of the week. When we get moved someone with have to be with her 24/7 so I may not be able to post much but will keep everyone updated when I get a chance. Today I am going to put a hat on her and next week I will finally put her first outfit on her. It is getting really exciting that we will be home by Christmas (if no set backs). Thanks for all the continued prayers.

I also want to say a BIG thanks to my dad, Luke, Bill, and my uncle Dwayne. They sacrificed their time yesterday to come over and work on getting my hardwood floors put in. We appreciate it so much guys! Thanks to Tanya as well for providing their lunch. God has blessed us with the greatest people in our lives.

Surgery went well

Autumn's gastrostomy and tracheostomy surgery went really well. She did great through both of them and had no blood loss. They did give her a transfusion before the surgery though. Her breathing was fine all through surgery but when she got back to the room she was not breathing so they had to bag her until she started breathing again. She already was opening her eyes and looking around and breathing over the vent which she has never done before so quickly after surgery. It was so good to finally see her face without any tape on it. I am just feeling a little overwhelmed knowing that she will still be on the vent when we go home and so it will be the same as it is in the hospital but we will just be home. I just wish I could have a baby that does not have to be hooked up to anything 24/7. I'm sad knowing she is my last and I can't do the normal baby things with her and that I've never even seen her not hooked up to anything. I know I will get use to it once we get home and get into a routine but it is a lot to take it at this time. I don't think the trach will be too hard to take care of--I'm just nervous knowing the signs of when she needs to be suctioned and I know that will also come with time and experience. I am so ready though to finally get to know my daughter, she still feels like a stranger to me since we really have not seen her personality because of all the drugs she has been on and I have not had the chance to care of her like a mother so I am just so ready for that to happen. So, Tuesday they will change out her trach and take out the sutures and if all goes well we should be able to move to a different floor soon after that (hopefully by the end of next week). We will be at the new floor for 2 weeks and then either to the Baylor house or home if we feel like we are ready for it. Tomorrow they will start giving her pedialyte and if she takes that well through her G-button then they will start her back on feeds and once she gets back to full feeds her IV can come out. I can't believe we are making steps to hopefully be home for Christmas. YEA!!! Keep an eye out for new pictures coming soon at http://www.autumn.haleydean.com/

Saturday help

It has been finalized that Autumn's surgery will be on Thursday around 1:00pm. :) Hopefully she will be out of ICU and on a regular floor the week of Thanksgiving because James and mom will be in Dallas almost the entire week to start training.

Saturday my parents are going to be putting in our hardwood floors in our living room and hallway so if anyone would like to come help them we would appreciate any help. Just show up at my house around 9:00am or when you can to help out. My mom and I already took out the carpet in the hallway and finished half of the living room. We had tile by the backdoor so it took FOREVER to get most of that up and we still have to get the glue off. I have 2 cuts and a blister to prove my hardwork. I bet I will not be able to move my arms and shoulders in the morning from hammering all the tile out. This weekend has worn me out so I am ready to go take it easy at the hospital and see my baby girl.

I will be saying goodbye to Sophie in the morning and hopefully taking the cat to Dallas if there is an opening but if not then I am still on a search for her a place to go. :( My mom will be a foster mom to my dog Sadie until my mother-in-law has a chance to get her from us so at least she will stay in the family. :)

Surgery changes and pictures

Well, we are not sure when Autumn will be getting her surgery now. They said they can't do it Thursday so they are going to try for Friday or next week. I am not happy if we have to wait next week because we have waited to long to get this done already and she seems to be getting worse each day with her breathing and I would like to be home by Christmas. So, we are jsut waiting for the hospital to call and let us know.

This weekend was very productive. We put hardwood flooring in our office and moved Gage's room. We also painted the stripes that were on the walls in Gage's old room which is all Autumn's now and disinfected her whole room. Tomorrow we will be shampooing Autumn's carpet and starting to clear out the living room and getting it ready to lay wood flooring. Also, tomorrow is the dreaded day of having to get rid of Sophie. I did my mourning on Friday night over my animals and let Sophie sleep in our bed and I even gave her people food which I never do. I am still looking for a no kill shelter to take the cat but I am running out of places. We have called shelters in Midland, Odessa, and the whole Dallas area and there are only 2 left that may have openings so I hope one of them can take her.

I've posted pictures of Gage's new room and our fun Halloween weekend and the latest picture of Autumn. Enjoy!

Looking for a new home :(

So, I made it home tonight and getting ready for a busy weekend of house remodeling so we can get prepared for Autumn to come home. My first priority is finding homes for the animals. My cat is the one I am most worried about. She is so tempermental that I can't see her doing well at a shelter and I don't think no one would want to adopt her since she scream and hisses at strangers. Once she gets to know you though she really is a loving cat (she at least loves me and James). She hates small children though--she will come to Madison if she is sitting calmly but others times she does not like her. She really hates Gage and just sits in the hallway and if he tries to walk past her she will slap at his feet or hiss/scream at him. It does not help though that he throws objects at her-the feeling is mutual towards them. It just breaks my heart because I don't want to see her sitting in a cage at a shelter and I really don't want to take her to a shelter that will put her down if no one wants her. So, if there is anyone that thinks she would fit fine in your home and would like to take her please let me know. llwilliams8@grandecom.net She likes our dogs but they have been around since she was 2 weeks old but I don't think she would like any other dogs but not sure. She has never even seen another cat so not sure how she would react to one. I really wish I could keep her and my dogs. Autumn does not even know how much I am willing to sacrifice for her health-she better appreciate this when she's older. ;) For 29 years now I have only lived about 6 months total without a 4 legged animal around so knowing this is my last week with my dogs and cat is really hard on me.

No new changes with Autumn except they were going to take her IV out today since she had no infection and they can stop the antibiotics. The doctor said now that they know she does that they will not order cultures and start antibiotics (isn't that what I already told them?) There will be a new doctor though next week that won't know and the circle of repeating procedures will probably continue. I only have about 2 more weeks though of ICU and then we can move to floor 7 for training. I am so ready to have a baby that I can dress and take care of myself.

Yesterday we met a 4 year old girl who has SB and a trach that she has been on since birth and has to be on a vent 24/7. It was very encouraging to meet her. She was playing and walking all over the place. The vent cord was about 6 feet long and she could even talk pretty well with the trach. I was able to see what was needed to transport the vent and suction equipment around. They had their nurse with them and she has one with her 16 hours a day. That was the only thing that I did not like--I really don't want a nurse around so much (just at night so I can sleep). I want to be able to take care of my daughter with the least help from nurses as possible. I say that now though and when she is actually home I will probably decide I do want a nurse 24/7. We'll see.

Trach surgery

The surgery is scheduled for Thursday, November 13th but we are not sure what time yet. I am going home in the morning to start getting the house ready and will go back on Wednesday. James will be there until Sunday and then go back with me again on Wednesday.

Needing to vent

Okay, so it is 4am and I can't sleep because once again I am frustrated with the hospital and myself. Yesterday we got up to the hospital and Autumn had an IV in. I was NOT happy about it. They decided to go ahead and start her on antibiotics because she had a slight fever yesterday and so they were afraid she may have an infection (they already went through this last week). Anyways, I told them the slight temp was because she had been swaddled and she gets too hot everytime they swaddle her. They just said well it was 100.8 and it has only gone down to 100.6 since taking her blankets off so they wanted to go ahead and put a catheter in her to get a urine culture. So, I did not protest and they did it. So, the temp went away and nothing had grown on the culture overnight but in the morning they still thought they should put an IV in her arm and start her on antibiotics. This made me so mad because here she has to go through the pain of another IV put in and then more antibiotics in her system that she does not even need. I expressed to the charge nurse that I thought it was just because she had been swaddle and she agreed but those doctors have different opinions. This is a new doctor on call this week and I seem to have trouble when new ones come on and only know what it going on with Autumn through notes. Autumn also has a diaper rash so bad that she has missing skin on her bottom and it was bleeding today. She has had this rash for a week now and how she even got one is my question. She should be getting a diaper change at least every 3 hours. The nurse today finally ordered a stronger, prescription cream. I just feel I don't have a say in my daughter's care and it is frustrating. They were also suppose to have a care plan in place so that Autumn would have the same consistent nurses each week but that still has not happened. I am frustrated with myself because I feel like I have not spoken up enough for Autumn. I mentioned to Dr. Adams how Autumn startles really easy and he said it could be from the medication but it also has a lot to do with being messed with constantly by nurses and having so much negative touch. Early on we were told over and over by nurses not to touch her so much because too mush stimulation is stressful to them so I never request to hold her unless I am asked and told it is okay. It is also a big ordeal just to move her to be held and so I did not want to bother. Well, that is going to change. Someone will get to hold her everyday because she needs more positive touch. I feel guilty that I have not opened my eyes to see that I really need to speak up for Autumn and not just do what the nurses and doctors say. She has been through so much pain since the day she was born and it breaks my heart and makes me furious when they do unnecessary procedures on her that cause her even more pain. I want to be able to stand up for Autumn but I also want to have a good working relationship with the doctors as well so I have not said much because I know once you become "a difficult mom" then they really will never listen to you. I just need the confidence to stand up and to find the right way to approach them without getting emotional doing it like I get just typing about it. This looks like a job dad is going to have to do so mommy does not lose her temper and say something that would not show God living inside of me. ;) James is much more cool headed than me--he was not even upset by the whole ordeal and here I am losing sleep over it. Well, I better get to bed. We still have not heard when the surgeries will be.

Meeting

Our meeting went really well yesterday. We really like Dr. Adams--we can tell he was really concerned about our family and Autumn's care. He took the time to sit down and explain everything about the Chiari Malformation and talk to us about the patients he sees on a daily basis and what he thinks we should expect with Autumn and her long term prognosis. There is no way to tell right now if the brainstem is just immature or bad. He said the MRI images did not look really bad so he thinks it will probably be that the stem just needs to mature. The brainstem controls breathing and digestion (by the chewing and sucking part of digestion). So, since Autumn's is not wired right at this time when she tries to suck or has something down her throat it is irritating to her and causes her to clamp down and not breathe. By doing the trach you bypass the whole upper airway of breathing and Autumn will be able to try to breathe on her own without having the upper airways irritated. She may though still have to be on a vent that hooks up to the trach but the doctor said it is a more humane way of having her breathe than constantly having tubes down her throat and nose and it is the most safest way of breathing and being able to take her home. He did say that she will probably be on the trach for at least 4-5 years just from what the majority of kids with the Chiari Malformation end up having to do. We also discussed doing a gastrostomy as well on Autumn. This will put a button to her stomach so that when it is time to feed her we can just hook the feeds straight to her belly instead of putting a nasal tube in to feed her. Once she can start learning to suck and swallow then we can start feeding her by mouth and to take away the gastro button they just remove it and it closes on it's own in 4-5 hours. Since she has the malformation we do not see her being about to nipple feed for at least a couple of months so this will make feedings much easier on both Autumn and us. We did not want to have to go this route but really it is our only option because we could get her home or just keep her hooked up to a vent in the hospital in hopes that the brainstem will mature. She had been having desats ALL day yesterday while we were at the hospital and already failed being on auto so they moved her back to full vent before we left. I feel this is God giving us the peace that she is not getting better with her breaths and we need to do something different now. We are hoping they can schedule the surgery for this week but not sure if they can coordinate having both surgeons available at this same time since we want both surgeries done at the same time. I will keep everyone posted on when those surgeries will be.

So, with all that decided we have LOTS to get done before Autumn gets home in 6-8 weeks.

First we need to get rid of our dogs and cats so if anyone wants or knows of anyone who wants a medium haired cat please let us know. She is not friendly to strangers or kids. She likes to be left alone and will be so loving though when she ready to have someone love on her. She is spayed and is declawed. So, if anyone is interested you can e-mail me at llwilliams8@grandecom.net. I will be taking my most loved bullmastiff back to the rescue we got her from so she will find a good home and we think Nana will take our little pomeranian but we will have to see. :) We decided it would be okay to keep the bird as long as we put it in Gage's new room.

Next, we get to move Gage to our room that is currently our office room. We need to fix the floor though and put in carpet first. I have no idea where we will put the computer and office furniture (we may have to get a laptop to save space).

We also want to replace the living room and hallway carpet and change it to hardwood and may need to do the same with Autumn's room. We want to make sure all the animal hair and stains are gone to have it the cleanest and most sterile environment to bring Autumn home to. We will also have to do spring cleaning to the house to get any dust out to minimize the threat of it get into her trach tube.

Next I will have to get organizer bins to hold all of Autumn's medical supplies in. There will be lots of supplies and medical equipment so she will need lots of space and organization in her room. So, I have lots to keep me busy while waiting for Autumn to come home. I can't wait!!!!

We decided to leave Madison in school in Midland and Dr. Adams said he would have social work call our school district to see if they will work with doing any homebound work with her. We think it will be too stressful to move her here for 6 weeks with us trying to get trained on the trach and it will add more stress to Madison. I will probably drive back and forth each week on James's days off and he will fly here on his days off so one of us will always be in Dallas to train on the trach and I can be home each week to give my mom and break and be there for Gage and Madison. The good thing is that Thanksgiving and Christmas break are coming up so it won't be too much having to go back and forth for me.

I also wanted to ask everyone to be praying for a little baby named Maggie. We met her wonderful family because her mother and I both went to Dr.McGee and she found my blog online. She came to visit me in the hospital when I had Autumn and her mom and aunt brought us gift cards so that James and I could eat out. Anyways, Maggie has the same level of SB and she also has the Chairi II Malformation. She is now at Children's as well and had her back closure yesterday. We want to pray that she will not have to go through everything Autumn has gone through and will be able to go home soon. They are a precious family and I hope Autumn and Maggie will be able to become great friends and be there for each other. We are glad that our paths have crossed.

6 weeks old

We are off to Dallas today. James and Gage will be driving back with me and staying throughout the week. Autumn was the same yesterday and they decided to wait until today to put her back on auto (frustrating) because they gave her last dose of methadone yesterday. So, hopefully when we get there this evening she will have been doing great on auto. :)

Our weekend

Well, I was wanting to post pictures from this weekend but forgot the USB port to transfer the pictures from my camera to my computer at my brother's house so no cute pictures of the kids. :(

Friday James and I ate lunch with Madison at school. Friday evening we went to a carnival at our previous church in Odessa and saw some old church friends. Gage won a cake on the cakewalk so he loved that. Madison is at the age where she can run around with friends and left us the minute we got there and we did not see her again until we had to hunt her down to come home. Gage completely wore me out--he was a bundle of energy plus he demands all the attention and loves to show off for everyone. He has a personality plus-we entered him in the costume contest and he walked right up the judges table and pulled out his shot (he was a doctor for Halloween) to show them and he did that to everyone we saw. We then went home and did some trick or treating to a few houses in the neighborhood.

Today we went to Fiddlesticks Farm. They have a corn maze, hay rides, slides, a cow train, corn shooter, hay jump, and goats to feed. The kids had a blast. I will have to post pictures once I get back to my brother's house. It was nice that we got to spend this last time as a family of four since once Autumn comes home there will not be much time that we can go out and do things with just Madison and Gage. Even though I had a wonderful day I was still constantly thinking of Autumn being in the hospital and being sad at the same time that I was not standing there next to her bed letting her grasp my finger. I miss her so much. My parents and brother though spent the afternoon at the hospital and my mom was able to hold her so that was comforting to know that she had people there with her and made me feel a little less guilty for leaving her. My sister-in-law went to visit with her on Friday so knowing she constantly has family checking on her makes me happy.

Autumn is still doing about the same. She is having a few desats and only a couple of actual apnea episodes last night and today. She is eating so much that she has already gone through all the breastmilk I left for her so tomorrow they will have to give her formula until I get back. I know when they were letting my mom hold her she went all the way down to 6 when they were moving her but that is because they completely unhooked her from the vent and I think that gives her a shock since she is not practicing breathing on her own and then goes from having breaths given to her to nothing at all and so they had to bag her. She will be completely weaned from her methadone (sp) tomorrow and they are going to try putting her back on auto mode so hopefully she will do good. The nurse said she was throwing fits today and was getting mad when they were changing her diaper so I guess that is a good sign showing that the pain med is getting out of her system more. It could be though that she is mad they took her heroin away. :) (Methadone is just a synthetic heroin).

I am getting more and more anxious about the meeting on Tuesday and what the outcome will be. Honestly, if we have to give her the trach I will be able to handle that decision and I will know at least she will be home by January. I am getting anxious about going to have to figure out about the kids, the animals, and James working while we are suppose to be getting trained on learning how to take care of the trach and not having him there everyday during those stressful times. I am constantly asking God to just give me peace and to help me not get anxious or overwhelmed by it all. I just have to keep quoting scripture in my head over and over reminding me what His word promises and that He will take care of it all and everything will work out. I don't see how people go through life without having the hope that Christ provides. People have made comments to us about our strength through all of this but we don't have the strength to do this--we are making it through each and everyday only because we wake up in the morning and ask God to provide His strength to us and each day He blesses us by offering Himself to carry us. If you are reading this and you don't have a personal relationship with God then you are missing out what it feels like to truly live in freedom. I am not talking about being a church goer or even saying you believe in God. I am talking about when you come to the realization that you only take each breath because God is providing it for you and that in return all you want to do is try to get to know God in a deeper and more meaningful way. Every morning that I make my long walk from the parking lot through the skybridge to the hospital and up to the 11th floor I think about my life in Midland. I realize that even though I am loved by so many people and I am probably always in someone's thoughts that I am still completely alone during that walk. I know everyone is going on with their own life (even my own kids and husband) and I realize that the only person who is constanly there with me is my God. I pour so much of myself into my kids, my husband, and my materalistic life and then I realize that I give so little of myself to the one who is constantly thinking of me and walking beside me. I find myself being a Martha but all God wants is for me to be a Mary and focus on living a life devoted to Him completely. So, waking up every morning and knowing that the creator of the universe wants to talk and walk with ME each day gives me a peace, joy, and hope that can never be experienced by anything else this world has to offer. Isn't God just so amazing?

I forgot to mention that our wonderful friends, Sarah and Bill took up a collection from people at our church who wanted to help us out and blessed us with a generous amount of money. I love how God shows us He wants to provide our every need. Thank you to everyone who donated money to help our family out. We love you all!!!!