Tuesday update

Just wanted to give a quick update today. Insurance has decided to give us 24 hours of nursing care for the first 2 weeks and then they will re-evaluate to see how many we need and may cut us back a few hours. It is fine with me because I really only want 24 hours for us to get started and then want to cut back anyways. So, they will be ordering our home equipment on Monday and we should get everything by the end of next week so I can do my last 24 hour room in. They are still searching for a nursing home that will let us stay the night so we can get on the disablitly program that will automatically give us Medicaid and that will take care of our nursing issues with insurance. They are doing more interviews this week for more nurses for us. So, it looks like that MAYBE the week of January 12-16th we could be coming home if everything goes smoothly and Autumn stays healthy. The light is getting closer. :)

Weekend of spoiling

So, both sets of grandparents were down this weekend to spoil their granddaughter. She was held from morning to night and so when they left she finally got her rest. :) We moved her up on her feeds to 80 ml but now they are going to move her up again because they want to eliminate her 2:00am tube feed so she will be on all bottle feeds. She will have to go from 11:00pm-5:00am without feeds but I think she will be fine since she sleeps all night anyways and she will be getting more at each feed. This morning she weighed 11 lbs. 2 oz. She's a chunk!


We got a new roommate so our room is cramped again. James and I are taking shifts though so that we can both be with Autumn each day but also both be able to spend time with the kids while they are here visiting. I am REALLY sick of the hospital right now and just want to be with Madison and Gage so it is helping me to not have to be there ALL the time. They did find us 2 nurses and we still looking (not sure how many they need). We are still waiting though on insurance to get back with us about nursing hours. Honestly, I am not sure how much longer I can stand hospital life and I just want to be home with my daughter. We already know how to completely take care of her and it is frustrating that we are having to wait on insurance to get home. Plus the people I need to talk to about all the issues have been gone for the holidays so it is going to take a little longer to get things moving. All I want for my 30th birthday is to spend it at home with my family so let's pray we are home by the 16th of January!!!


James just called to let me know they had the drawing for the visa gift cards and raised over $900.00 for us. YEA!!!! That will help with James missing work to be here helping me with Autumn. Thanks to everyone who helped purchase raffle tickets and the Midland PD. I have to say the PD has been so understanding about all the work James has had to miss and his co-workers have been great about having to work short handed. I am so thankful they have been so selfless to allow me to have my husband here with me to be a support and help to me--it is so much easier for me to cope with him here. They are a great group of men and women. God has really opened our eyes to how many people love and care for us.

Newspaper article

So, we got a write up in our local newpaper about Autumn on Christmas Day. You can read the full article at www.mywesttexas.com and the story headline is something about Midland family spending Christmas at infant daughter's bedside in Dallas. The article did get some of the info wrong like some dates and order of events but everything else was pretty accurate. We have already gotten several comments on Autumn's website about people who have special needs kids and want to be a support group for us. It is so sweet to see the community wanting to help so much and just love on our family.

We received another Wal-Mart gift card in the mail today so now we have $950 to spend there. :) So, I think I will be making another trip home so that I can buy a deep freezer and get stocked up on groceries, diapers, and formula before Autumn gets home. I also need to take ALL these Christmas gifts home and get them all organized before Autumn gets home as well.

Autumn has her first appointment at Scottish Rite hospital on January 5th which is also the day Madison turns 10 years old. I can not believe I will have a 10 year old and a 3 month old. By the time Autumn is 10 I will be ready to retire. Ha! There really is no new news about Autumn at the time. I hope next week the insurance and nursing issues will progress and we will have a better idea when we will be going home. I will post when I hear anything new.

Merry Christmas

Christmas Eve we all drove around looking at Christmas lights and then came home to open a present. Every year the kids get to open their Christmas pajamas and a small toy on Christmas Eve. Madison, Haley, and Chris then acted out the Christmas story with the little people nativity scene to remind the kids the true meaning of Christmas and then we sang a Christmas song together. We had a great Christmas day today. We woke up and watched the kids open their Christmas presents, had lunch, and then went to the hospital to see our little Autumn. The hospital had given Autumn 7 more presents to open so she got a little over spoiled and had no clue whatsoever. Gage's big present was Rock Band for the Wii and Madison got a real drum set. As I was listening to the kids bang on the drums I was thinking how much I must really love them to get them such LOUD toys. I told Madison though she is going to have rules on when she is allowed to play her drums and they will stay in the garage. It was a long day and I am exhausted.

We were blessed even more for Christmas. Our church sent us a gift card for $250 to Wal-Mart and a Sunday school class from First Baptist of Odessa sent us a gift card as well for $500 to Wal-Mart. So, we are set for formula and groceries for awhile. I think I may see about getting a deep freezer so I can just go to Sam's and get lots of groceries at once and not have to worry about trying to get to the store as often since it will be such an ordeal with Autumn. My dad's work all pitched in for Christmas and gave us $750 and we also got our yearly Christmas money from my MawMaw and PawPaw. So, once again God blessed us abundantly and we don't have to worry about bills for awhile. :) THANK YOU ALL!!!!

Tomorrow James' parents will be here to celebrate Christmas with us and to see Autumn again. They have not seen her since October so they are going to be shocked how much she has changed and how big she is now. :) Autumn will get a busy week of love from both sets of grandparents.

Gage and Madison have enjoyed seeing Autumn again and learning how they can help take care of her. They like to empty her water thing that is connected to her vent circuit. Madison also helped me give Autumn a bath and they both were able to feed her a bottle. Madison though is not doing her big sister duty of changing dirty diapers. I told her that there is no point of having a big sister if she won't change a dirty diaper for me. :) She said the next time it is a small one then she will try but she thinks it is just too gross. It is such a blessing though to sit and see all three of my kids in the same room together. I am so blessed to have the most beautiful children in the world (at least I think so) ;)

Christmas party

This evening the hospital gave a Christmas party for all the patients and their families. It was so great to be able to load up Autumn and stroll her downstairs so the whole family could go to the party (the kids got there right when the party was starting). They had pizza for us to eat, a story teller who also sang Christmas songs with us. Santa also made an appearance and they had gifts for all the patients and their siblings. So, we all got a family picture made with Santa. It was so great to be able to celebrate Christmas all together. The kids each got a gift (Autumn got 3) and they all also picked out a stuffed animal and got a blanket. We really love this hospital.

This morning I got a call from a nurse wanting to work nights. YEA! So, I called the nursing company and they said they are in the process of getting nurses for us and almost have us staffed. They were interviewing a nurse today and then will also be interviewing the nurse that called me today. So, it is all coming together. Insurance called today to give me an update but I was in my care meeting so I will not be able to find out the update until Friday. SSI came to a decision about if they are going to declare Autumn disabled but will not tell me over the phone so we have to wait for a letter to find out. Hope everyone has a Merry Christmas!!!

Crying out praises of joy!!!

Yesterday James went into work early to do the raffle drawing that the Police Association was doing to raise money for us. After he drew the names they presented him a check from the 200 Club of Midland for $1,000 and then another check from the Police Association for $9,000!!! Oh my goodness, I could not believe my ears when James told me. I was thinking how we do not deserve for God to bless us this much because there are so many other families going through the same thing that we are and have it a lot worse. It showed to me that God truly loves and takes care of His children. I have always sung of His faithfulness in church but to truly be walking in a storm and see His faithfulness firsthand is such a blessing. God have given us the strength to not give up in this storm and to continue to trust in Him so that He could show us just how powerful He is and He can lavish us with blessings. What I am learning through all of this and how much my mind set is changing I would not change any of my circumstances because it would mean that I would of never to fully depend on God the way I have. Not only do we get to see how much God wants to take care of us but we also get to care for an amazing baby girl. Even though I hate going through storms I hope everyone gets a chance in their lifetime to experience God's indescribable love and faithfulness.

The police also wants to set up a fund at the bank for Autumn to help with medical expenses and the Midland paper went on a ride out with James at work last night to hear our story. I don't think our story is unique or special but I hope that those who hear it can hear the message of Christ's love that lives in our family and what He has done and continues to do in our lives. I always read stories of amazing families going through of unheard of situations and I thought wow they are special people. Well, now that I am in a family who is going through and storm and continue to hang in there I realize it is not the people who are amazing but it is God who is amazing and is just being shown through those people.

So, I knew God would help us get through each month to pay our medical expenses but I never thought He would bless us like this. He likes to go BIG on the blessings! Now we can pay the collection agency who is already wanting to collect on debt when we have not even gotten home to deal with all the bills. :)

Autumn update: The sleep study really did not help much to figure out why Autumn needs extra oxygen. She is not desatting in REM (the deep sleep). She sometimes takes one deep breath and then follows with lots of small breaths and then will apnea. She also is doing what an overweight older man would do and take one really deep breath and then just stops breathing. So, they are going to change her Peep setting on the vent and see if that helps her to get off the oxygen. I don't think it will work since yesterday afternoon after they changed her setting she had 2 apnea episodes where she turned dusky gray. I did not have to bag her but just turned up her oxygen and she came right back up. She is a puzzle for the doctors. She turned 3 months old yesterday and weighs 10.15 pounds. A 5 pound weight gain since birth. She is also up to 6 bottles a day. They hope she will be on full feeds and not feeding through her button once she gets home but they will keep the button for a few months just to make sure. Her and I are getting a daily schedule down and it is nice to just be able to bond without having surgeries or anything else getting in the way of snuggling her. She is getting spoiled and likes to be held. She also hates her occupational therapy and never cooperates with them. I say she is lazy like her daddy. :) h

Christmas miracles

First, I will say my room in is over and went great. I got about 2 hours of sleep (hospital life) but came to my home away from home and took a nap and about to go back to care for Autumn until she goes to sleep tonight. :) She's so precious. Really the worst part about the room in is having to ask for my daughter's formula and meds. I can't wait until I am home and can just do everything without having to ask like I am not capable of remembering what time my daughter needs what. I understand though they have parents who forget so they have to make sure.

Anyways, I received some GREAT news yesterday. They have found a company in Midland who has 4 pediatric nurses who are all vent trained. Now is that God or what??? The lady in charge is calling the nurses to see their availablility and see what cases they can move around to take our case because they really want our case. Praise you Lord that we actually could be home in January. Also, insurance has agreed to give us more nursing hours but they have not decided on actually how much but anything more than 2 hours is better than nothing. So, I am just praying it will be at least 16 hours. It all seems too good to be true but that is where I am learning to just trust God and believe in His miracles. :) Still waiting to see if Autumn is going to be declared disabled so we can try and get Medicaid as well--still working on that one.

I would write more thoughts but I am anxious to get back up to the hospital and give Autumn her bath and trach care. Have a great weekend. Oh, pray for Gage--he has a sinus infection and the doctor gave him some medicine. He was so congested this morning he could not even talk on the phone. I wish I was with him. :( I hope he is all well when he comes down or he will not be able to visit Autumn.

Jumbled thoughts

Well, today I spent most of the day alone except for when Brooke and Maggie came to visit today. Thanks for the company. Just a reminder that Maggie is Autumn's SB friend. It was sweet seeing them lay next to each other with their shunt scars. Poor girls! :) I took pictures and will try to post them one of these days. :)

So, during the day I sit at the hospital taking care of Autumn when she needs something and then spend the rest of the time playing Brain Age on the DS or watching TV. I have a million things I should be getting done--like making calls for Medicaid and other places but I have no numbers with me and I can only call long distance on my cell phone which hates to stay charged and I really am not suppose to be on my cell but no one has yelled at me yet. Anyways, I don't want to leave the hospital until Autumn falls asleep at night and so by the time I get to my brother's house--I have time to do my laundry, update my blog, check e-mails, pay bills, take a bath, and go to bed. I then get up the next morning to do it all over again and then sometimes I stay at the hospital overnight so that adds me being tired the next full day since Autumn likes to make the pulse ox go off ALL night long and I can't sleep with loud beeping. Anyways, I really don't know why I am even blogging about this--I guess since I have been alone most of the day I need to tell someone about what my days are like.

Anyways, so while I am at the hospital or driving that gives me lots of time to think. One minute I will be thinking how I feel blessed to have a special daughter who is teaching me so much more about my faith in God and that I can do this journey and I am prepared to run this race. The next minute though I am thinking about Madison and Gage at home and how I wish I was there doing my normal life and how I wish I was not going through this right now. It is a continous battle of the mind to stay focused and to keep pressing on. I also think stress is messing me up--I have always been a very organized and well planned person. Now I can not even remember small things I need to get done each day. I also feel horrible because SO many people have been blessing us with different gifts yet I can not remember who I have thanked and who I have missed. I was writing it all down and sending thank you notes but now I can't figure out who received one and who didn't. So, I really hope EVERYONE who has helped us knows how much we appreciate it. I have not forgotten what you have done but just if I sent you a card or not--so some people may get 2 cards from me and some may not get any at all. Sorry! That goes to show that God has sent so many wonderful people in our lives to help in so many different ways that I can't keep up with all the thank you's. The same also goes with phone calls and e-mails--I can't remember who I call back and who I don't. Man, I hope I get things together before I get home. It is just so frustrating to me since I have always been so undercontrol and now I feel like my brain is made of jello. Well, not really even sure if this blog made any sence or had any purpose other than me getting some things out of my head and onto the computer screen. By the way, Autumn is doing okay. No results of the sleep study yet but hopefully it will answer some of the doctors questions. Autumn may move up to 5 bottles a day tomorrow. I will be doing my 24 hour room in starting at 10:00am Friday so pray for me a good night sleep tonight since I did not get one last night and I will not get one tomorrow night. I want all my friends and family to know that I love you all and I can never express to everyone how much our family has felt loved and blessed by you all. Good night!

Wednesday

I am back in Dallas now. Autumn is doing good. She weighs 10.5 pounds and is up to drinking 4 bottles a day. She may not even need her g-button when we go home so that is good. She does have some fluid on her lungs and they don't know why but are going to give her some diuretics to try and get rid of the fluid. She had a sleep study done last night to see what her brain is doing and try to find out why she needs the oxygen at night. She has also been needing it during the day but that may be because of the fluid. It will probably be a couple of days before we get the results back.

James is finished with his training and I am still training. I have to do everything he does but I have to do it all twice since I am the main caregiver. James will be heading back to work today but will be able to bring the kids down to be here for Christmas and give me a break since I will be at the hospital for 5 days straight alone!!! Through January we are going to try to take turns weekly going back and forth to Midland. I know I need to try to be there more with the older kids but James still has work so we are not sure how much more he can miss before the family medical time runs out and when we run out of money from him missing work but thankfully God has been providing.

We are still trying to figure out how to get Medicaid and I need to call around to places but it gets hard when I am stuck at the hospital and trying to take care of Autumn and be with her. I found out even if she gets disability that it does not mean she will get automaticalling approved for SSI because they still look at your income. So, James makes about $400.00 too much each month to get approved for SSI. She is on Medicaid as long as we are in the hospital but once we leave it goes by income. Also, our insurance has a 2 million lifetime max and we have already claimed over 500,000 and she is only 3 months old so I am not sure what is going to happen when we reach the 2 million and still can't get Medicaid. It is sad that the hard working Americans are the ones who can't get medical help for their disabled children but if James did not have a job, did not pay taxes, and lived off the government we would have no problem getting the medical help we need. Since we make $400 over the cut off amount they expect we can take care of our disabled child. So, unless insurance agrees to help with nursing or we find some loop hold to get on medicaid we are pretty much stuck in the hospital because we can't afford to pay around $3,000 or more a week for nursing care and there is no way we can go home without help. So, still waiting for God to perform miracles for us and I know He will open doors for us but I know it will be His timing and not mine so I am trying to stay positive and hang in there. *sigh*

My weekend home was good except Madison and I had a couple of fights. I hate fighting with her but we are JUST alike and so we don't get along--too hard-headed. She brings out the worst in me and that is something I am still trying to work on. Anyways, Friday night the kids, mom, my little cousin Jordyn and I went to Imagine Christmas at our church and rode the hayrides around looking at light and had out popcorn and hot chocolate. It has become a tradition every year now but sadly James has never been able to go with us because of his work schedule. Saturday the 3 kids (with Jordyn) and I went shopping to 2 needy boys which is also a family tradition we do with the kids each year to teach them to give back to others in need. Madison had a great time this year picking out the toys and clothes for her boy and Gage is still trying to get it and wonder why the video game was not for him. :) The kids and I then went to the movies which I have not taken my kids to a movie in over a year so that was a fun mom and child activity but Gage got bored about 45 minutes into the movie and was ready to go and then I remembered why we don't go often. :) Saturday night the kids went to spend the night with Madison's grandma and so I took the time to hang out with the girls and go out to dinner. I strated having a bad evening before I went so it was nice to just get my mind off of everything for one evening. Sunday I was going to head back home but decided since James was doing his rooming-in and I could not go to the hospital anyways that I would wait and leave early Monday morning. I spent the time cleaning, doing laundry, and packing. The kids came back home around 2pm and we opened a few early Christmas presents from Grandma Roxane and her friend Karen. We then spent time playing the all the toys together and then it was time for bed. So, it was a good weekend and I was sad as always to have to leave and come back to Dallas but I was also ready to see my baby again and get cuddle time in. :) So, this week James will be working and I will be here taking care of Autumn. Please keep the insurance, medicaid, and nursing issue in your prayers. God bless!!!

How???

Okay, this week I have been asking God how am I going to do this? Being back home with Madison and Gage reminds me of the everday stresses of taking care of the house and kids. Gosh, I feel like I can't handle it now so how am I going to handle it with a special needs baby added to the chaos? I just know that every minute of my day is going to have to be used doing something productive and no more getting to do what I want to do. Honestly, I don't know how it is going to all work out but I know it will have to somehow. My problem is that I am relying on myself and I know that there is no way I can be the mom I need to be, the wife I need to be, and also take care of my own needs on my own. I know I am not capable of giving everyone what they need all the time even though I try. God gets us to a point where we realize that we can't take another breath without Him. Well, I have reached that point. I never thought this would be my life to take care of a special needs child. I am sufficating in all of my thoughts of how?how?how? I just can't stop crying about the fears I am feeling and worrying about tomorrow. Then this week I recieve this verse in the mail from the Stonegate Prayer team:

God, I will release the weight of my burdens and cast them on You, knowing that You will sustain me, I declare, God, that You will not allow the righteous to be moved. Psalm 55:22

God sends the perfect verse at the perfect time. I don't know how I am going to get through each and everyday but God knows. He will be the one to help me wake every morning and give me the strength to get through each and everyday. I need to remember He wants me to just take one day at a time and to focus on my present and not my future. He is not promising that things will not be difficult but He promises me that He will be there with me every step of the way and that He wants to be the one who carries the burden of tomorrow and my job is to just wake up each morning and to trust in what He is going to accomplish in my life for that day.

I am thankful that God has taken me to a point in my life where I can clearly see now that without Him I would be nothing and that I am only who I am and I am only blessed abundantly because He has chosen to love me and take care of my needs. Thank you Lord for taking my burdens today and sustaining me. I will need you to do the same tomorrow.

pictures

Here are a few current pictures of Autumn and the kids. I made it h0me safely but I am sad Autumn is not here. I really miss being home and wish I did not have to go back to Dallas. :( I did come home to a wonderful surprise--not only did my flooring look great and my house was all nice and clean but my sweet friend Sarah and her mom-in-law Sue painted my kitchen for me. What a blessing!!! God is always so good to our family.

Heading home to visit

I am so excited that I get to head home today but it will be a busy, quick trip and then back here for business. James will continue to work on his training while I am gone and then I can work on mine next week. Our care meeting went well. They still wonder why Autumn needs oxygen at night since she is on the vent she really should not be needing the oxygen at night. So, while we are waiting for insurance and nursing they are going to try to solve the problem so we will not have to have oxygen at night but not sure if they will be able to. Autumn is up to eating 3 bottles a day and doing great. I know I have posted in the past about what a good baby she is but it still amazes me how laid back she is. She only fusses when her pacifier falls out of her mouth or if she is getting hungry but it takes hardly nothing to soothe her. She is a very content baby and just lets you do whatever to her and she still LOVES her baths. :)

Anyways, back to the meeting. So, we are just waiting to find some nurses still. Again, if anyone wants to be our nurse you can just call Nurses Unlimited and tell them you are interested in signing on as a home nurse for Autumn Williams. We are still waiting to see how many hours our insurance will approve us for. I am thinking I can get by with 2 full time nurses-Mon-Fri (1) working 3pm-11pm and the other working 11pm-7am and then on the weekends have a part time nurse work Sat and Sun from 7pm-7am. But, if insurance will give us more then I am going to take it to make sure what I need before cutting back any hours. I'll probably get more of a clue when I do my rooming-in training at the hospital. James has to do a 24 hour period and I have to do two 24 hour periods. This is where we do EVERYTHING by ourselves for 24 hours and no help from nurses or each other. I know we are going to be exhausted when the day is done but now they will know if we are prepared as well as us knowing since we may not get nursing on some days. :) Well, I better go get ready to head home and see my kiddos.

I forgot to say thanks to mom, Sarah, Sue, Cindi, Jesse, Krista, and Madison for helping to organize and clean my house last Saturday. I appreciate you ladies SO much and I feel a lot less overwhelmed about all the things needing to get done before I come home. Love you all!!!

Tuesday

Today we have our care meeting to discuss where we are at, what plans we have, and a possibly dismissal date. I spent yesterday calling nursing agencies and talking to insurance. It looks as though we may not be home for a LONG time. I have not been able to find an agency with any nurses available and a lot of the nurses will not work with a baby on the vent. So, if there are any nurses in the Midland/Odessa area who would like to be Autumn's nurse then let me know so you can go to work for the company we choose and fix our problem. :) Insurance is still checking on what they can do for home nursing for us so we'll see. So, I just need a trip home to give myself some more energy to push on and to see Madison and Gage--I think I will go home this weekend to get away and get refreshed to spend several more weeks here. Yuck!!! Autumn is doing good still--she kind of had a day of desats yesterday but that happens every once in awhile. They are trying to wean her vent settings down some also. James will be trying to finish up his training before he has to go back to work next week. Keep praying for us to hang in there and for God to provide some nursing for us.

Sunday update

Okay, so we decided to leave Autumn at the hospital by herself tonight. I feel so sad for leaving her but James and I have not been able to be together away from the hospital for about 3 weeks so I know we need that time alone together. The nurse assured me that they would take good care of her and that I can call anytime and as many times as I want to check on her. I also know Autumn sleeps well at night so hopefully she will not even notice we have left her. I was able to get her asleep before we left--she loves laying her chest on my chest and sleeping on my shoulder--I think it feels good for her to get off her back.

She has been doing great these last few days. She is taking her bottles like a pro. I decided to give up the breastfeeding because I was not making enough milk for her and I am too tired to try to pump every 3 hours to get my supply back up so she is on formula and I think that will work best for us when we are home anyways. I felt bad for giving up but I know if it is stressing me out then it is not worth it--I already have enough to stress out about. We are still just giving her 2 bottles a day to build up her strength. Today though her little foot was completely swollen because they put a id band on her ankle and a security bracelet on her ankle so it stopped the circulation to her foot. Her foot was hard and you could not even see under her little toes. We took the bands off and propped her foot up so this evening it looked much better. Her face is also a little swollen and I am not sure what that is from--we are wondering if it is from the trach ties being tight on her shunt tubing but I forgot to mention it to a nurse today so we will see how she looks tomorrow. It may just be her growing and getting fatter-who knows. She weighs just a little over 9 lbs. now. :)

The training is going along really fast. They have sheets with 4 different phases on each sheet of things we have to accomplish. We already finished phases 1 & 2 and just have to each do one more trach change to finish phase 3. We started on phase 4 today and hopefully will finish it up by the end of this week. Phase 4 consists of learning the vent, changing the tubing, and learning how to transport Autumn. Everything has been pretty easy so far. The RT showed us how to change the tubing today and James was in charge on bagging Autumn while we changed everything out but she did most of the breathing on her own so he did not have to give her many breaths. The doctor said they may work on changing some of her vent settings this week--they have already been trying to see if she can go without oxygen at night but most of the time she ends up desatting a little and needing some. She is really doing awesome though and everytime she has desatted she has always come back on her own since being trached.

So, tomorrow my goal is to call insurance to see if there is anything I can say or do to convince them that we need home nursing and to call and find some home nursing and home equipment company. We also found out that the house will need to be inspected before going home so I want to get the ball rolling asap. We have made a plan B if we don't get home for Christmas but I am still praying for that miracle.

Going back down on this rollercoaster ride

Well, God is showing me that each and everyday I have to put my trust in Him to provide my needs. I always seem to doubt Him and then He proves me wrong and always provides. You would think I would learn by now and not get discouraged but I guess that is the human inside of me.

I decided to take on the home healthcare job myself today to get a head start on it. Well, I called 4 companies that was listed on my in-network list and only one actually had a working number. So, I ended up finding 3 companies that said they have nursing for pediatrics but was not able to talk to the person in charge of it at all 3 places so hope they will call me back next week. I am not even sure if 2 of the companies are in-network though. After calling them all, the case worker at Baylor came to see us and tell us the bad news. Our insurance apparently does not cover in home nursing (only 2 hours a day). So, not only now are we trying to search for in home nursing in our area we also have to fight with insurance to approve nursing. If they don't and we have to pay for it, it could cost about $2,800.00 a week just to pay a nurse to come in 8 hours everyday. We also found out that finding homecare equipment companies in our area may be a struggle also since most don't deal with ventilators. So, I am getting really doubtful that we will be home for Christmas but I am still going to have to trust in God to perform His miracles to get all of this in order for us in just 2 weeks. We also don't know the status of getting approved for disability so that we can get Medicaid to help pay for our nursing. So, we are at roadblocks right now but continue to train so when everything does get worked out we will be ready.

I did get to nurse today and Autumn nursed like a pro but not sure if she really got anything or not. :)

Quick update

I just had to share my excitement that I will get to start breastfeeding Autumn to see how she does. I had just given up on pumping but I still have a milk supply so now since Autumn is feeding just fine I get to try and breastfeed (hopefully tomorrow). James successfully did his first trach change today--I was proud of him. So, one more learning step towards home. YEA!

Training has begun...

So, I survived sleeping at the hospital last night. I was up at 12:30, 2:30, 3:30-5:00, 6:00, and then got woken up at 8:00am to start my training. They showed me how to take respiration and heartrate and went over the nebulizer meds she is on and taught me how to give her meds to her. After that she was fed another bottle with blue dye to see if it is going down her trach or not and so far it is not. So, then it was time for her bath and then at 2:00pm it was time to do the medications by myself so I could be checked off on them. James then started doing his training that I learned that morning and this evening he will have to be checked off for doing her breathing treatments. After the treatment it was time to do a trach change. We both have to do it 3 times to be checked off. So, I got all the supplies ready to show her how well James and I worked together to do a trach change. Ummm.....no...I had to do it all by myself. What? We were told to always have 2 people but here they teach you to do it on your own in case of an emergency and you are home alone. I do not have enough hands for that but I figured it out and got it done with some kinks in the way though. I took out the old trach, slipped the new one in, got her hooked back up to her vent, and started doing the trach care where you clean her neck and near the stoma (opening) but she was gagging so I asked if she was okay and then we discovered the trach had come out--so I put it back in and continued to try to do trach care with one hand cleaning while the other held the trach in. Anyways, it took me awhile to get the ties tight since I am use to doing it with 2 hands instead of one. So, one change down and two more to go. James is really going to have fun trying to do it since he has never even done the changing of the ties, he just always holds for me. Sometime this week we will start training on the feeding machine and hopefully get trained on the vent by Tuesday. We have a care conference set up on Tuesday at 4:00pm to discuss what we have accomplished already, what we have left to do, status on home equipment and care, and when we can go home. I asked the doctor yesterday if being home for Christmas could happen and he said he knows we could be trained by then by if they can not find us nurses then we can't go home until they do and since our area is so limited and it is during the holidays that it may not happen. So, we need everyone's prayers that we get a Christmas miracle to be home as a family for Christmas. I even asked if he would consider sending us home on just 8 hours of nursing care instead of 24 and he said if he thought it would be safe for Autumn then he might consider it but scared insurance would never give us more than that the 8 hours if that is what we get sent home on. He knows how important it is to us to be there for Christmas so he said he is going to try his best to get us there but there is a good chance it may not happen. All I want is 12 hours to help in the evenings and night and I know we can handle the rest. I can't imagine having someone in my home for 24 hours a day. Yuck! So, anyone who wants to do home healthcare please sign up to be my nurse. Athena--;)--you could work days if I have to have one. Anyways, it is my turn to stay at my brother's to get some real rest and then back for more training in the morning.

We arrived at Baylor

Okay, so we were suppose to leave for Baylor at 9:30am this morning but had some set backs so after the 3rd time the transport team got called to get Autumn we were finally on our way at 1:15pm.

Well, I am thankful we are there because it means one step closer to home but it is not what I expected there. We are in a small room and are sharing with another patient. We have a chair to sleep on at night and we have to either bring our own food from home, go pick up food, or order delivery. James and I are going to take turns staying every other night but I am not looking forward to my nights since I hear EVERYTHING when I sleep so I know I will not get any rest on my nights. The alarms are also much louder so that makes it even worse with 2 patients having alarms going off at night. So, right now I am feeling homesick and a little depressed. I know we can learn everything fast to get home but the home healthcare may keep us longer than we want to stay. We have to wait until our home equipment arrives at Baylor to be trained on it and then to get nurses in order at our house before they can release us. I am scared that will not get done soon and it will prolong our stay. Also, they changed everything on us once we got there so I was a little frustrated about that. They will not give Autumn breastmilk until the nutritionist gives them the correct formula for it so she has been getting formula. There is also not a private place for me to pump so I think I am just going to stop pumping and let Autumn have formula now. I think I held in long enough having to pump for 10 weeks and now my life is just getting too hectic to keep it up. I know I will not get to breastfeed her anyways so I guess I'll surrender to formula. :( They also changed her feeding times. They did get her a new type of trach now. It is a flex trach so now there is not this tubing under her chin and she can move her head side to side much easier. I was able to change her trach today so that was good. It was easy! Her vent is also hooked up better with the new trach so it will not pop off everytime she moves and we don't have to tie it up now. It will make tummy time much easier as well. The feeding machine is different but the same concept and the pulse oximeter is much smaller but has a loud alarm which will be good at home when I am in a different room. I know she is going to get great care from Baylor but I have been gone from home for so long that I am getting near my breaking point and I JUST WANT TO BE HOME!!!! I want to sleep in my own bed, I want to be able to cuddle with my husband at night, I want to tuck my kids in at night and say their prayers with them--all the small things you take for granted in everyday life I want to be home doing again. So, I am asking God to help me get through these next few weeks so we can be home a get a little taste of homelife again.

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!!!!

Thursday

Not too much to report today. I love being home but I am already missing Autumn so much. The nurse said there were no changes in her care plan today. She seemed like she was awake more today for the nurse. PT came in and worked with her and said she did well and just listened to her music while they did her exercies with her. She said she had a couple of desats today but just in the 80's and then back up on her own. Have a Happy Halloween tomorrow!

I'm home!!!

It feels great to be home for a few days. The kids were so excited to see me and had to show me all the new things they can do. I can see now though that it is starting to effect Gage that things are so abnormal lately. He started getting sad and crying a little and told me he wanted to go to Dallas. He said he misses Autumn and can't wait for her to come home so he can hold and kiss her. Madison is already getting sad knowing I will be leaving Monday and that Gage gets to go with me but she will have to stay here for school. The good news is that we are all together until then and we are going to make the most of our time together.

We did set up a meeting for Tuesday at 3:00pm to meet with Dr. Adams who is the Director of Pediatric Developmental Disabilities at Scottish Rite Hospital. He wanted to meet with James and I before having a care conference with all the doctors. We already know that the neurosurgeons want to do the trach so we already have their opinion but they are not the ones who see the kids once they leave the hospital. Dr. Adams will be able to tell us what he sees and give us his expert opinion on what will be the best option for Autumn. He said we may not even need a care meeting with all the doctors after talking to him because we can just make our decision and he will take care of getting things done and the conference may not have to happen until we get closer to going home time. I think after talking with him we will feel more at peace about the decision we will have to make and hopefully he will be able to answer all of our questions. I will try to post some updates this weekend but no promises. :)