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.