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. :)

Tuesday update

Autumn had a good night and a pretty good day. She only desatted once last night to the 60's which is not bad for Autumn. Today she went down to the 80's about 3-4 times. I was able to hold her again today and she did desat to the 40's while I was holding her which gave me a little scare. She started to get dusky color and the nurse was out of the room so I yelled at the respiratory tech as she was walking by for help. They are pretty use to hearing Autumn's alarm going off and knows she usually comes back on her own so they don't always rush to her room but she just turned her oxygen up a little and she came back up without having to be bagged. They took out her PICC line today because they were concerned about infections. Other than that is was a pretty quiet day.

Yesterday physical therapy came in and showed me how to do her feet and leg therapy so now I can work with her each day. I also learned that the bottom of your feet are controlled by different nerves than the top or even sides of your feet. They also said just because she may have sensation that does not mean that her muscles will work and then it can get even more complicated about the strength of the muscles. She has sensation on the tops of her feet but not the bottom--she said until she gets older and starts trying to use her legs and feet we will not know the extent of the damage. Also, the club feet look different everyday so that is why they have not put splints on her since somedays they don't look clubbed and other days they do turn in more and look clubbed. She will need therapy at least 2-3 times a week while she is a baby and then it will increase as she gets older.

I also learned today that spina bifida kids have a hard time with temp. control. Anytime they swaddle Autumn she gets pretty warm so they have to really watch to make sure they keep her temp normal. They said if she ever runs a 100.5 we really have to watch and see if it goes down and if not then we would need to call the doctor. Autumn is teaching us a lot about the medical issues and I know this is just the beginning.

Praying for a miracle

I want to ask everyone to please join us to pray that God will choose to perform a miracle in Autumn and heal her of the apnea episodes. I have so many thoughts going through my mind of what I feel and believe but I can not gather them all well enough to type them. All I can do is fall to my knees and cry out to God to feel my heart and hear my prayers. Please join us in asking God to show His wonderful works and let Him know that many believe in Him and what He can do for our little Autumn.

Balancing Act

So, I am having a hard time trying to figure out how to balance myself between all 3 kids and my husband. Madison is failing math and missing both me and her daddy (that's another story). Gage is learning how to write his letters and numbers and I am missing out on him growing up so fast. Autumn is still doing the same-riding the vent and not breathing on her own. James is currently working an 8 day and really wants the family home together since it has been 2 months since we were all home at the same time. So, I decided to go home on Wednesday instead of Friday to spend more time with the family. Autumn is just laying there sleeping anyways and we will not have our meeting until next week so I do not see any changes happening between now and then so this really is the best time to go home. As a mom though I feel guilty when I am in either place because I know I am neglecting someone no matter where I am. Right now though I know Madison and Gage need me more. I also have to try and decide what is going to be best for Madison school wise since I am sure we will probably have to get the trach and will be stuck here for another 6-8 weeks. If she is already struggling in math I am scared a school change will make it worse but she also is sick of her school because there are no good Christian friends so she wants to leave. What to do??? So, if it is not the stress of Autumn and her medical issues it is the stress hearing the life of a 4th grader. This better be the most stressful journey we ever have to go on because I am not sure if I can take much more than this.

Sunday

Sunday turned out to be a much better day. We had the picky nurse that I have talked about before but she is also a straight-forward nurse that gets things done. So, I told her my frustrations and broke down to her and the doctor that never called me back on Saturday. They understood my frustrations and said they were going to try and get a care conference scheduled this week instead of the next. The only reason we are still in the hospital is because of the breathing issues and so once it gets taken care of we are free to go home--so it looks as though we may have to get the trach afterall. I am concerned though since there is not much nursing care available in Midland so I have lots of questions for the doctors. I was also able to hold Autumn for an hour and a half yesterday--it had been almost 3 weeks since I held her last and she was awake for the first time while I was holding her. They said I should be allowed to hold her during the day if I want just in case the vent tube comes out there are more people of staff. It is such an ordeal though getting her from her bed to my arms. She is still having a few desats and not wanting to breathe much over the vent but the nurse practioner that I really like said they will continue to monitor her blood gases and maybe try to move her back to auto again soon. She was also frustrated that Autumn had to go back to regular mode while she was off on Saturday. I did find out the shunt is working and that there is no infection so that is great news. We just need to figure out the best care solution for her so we can make steps towards getting home.

Frustrated

So, Saturdays I guess are going to be bad days for us. Yesterday was a frustrating day for me. When I got to the hospital they said Autumn had several desats and that auto mode on the vent kept kicking in breathing for her. I was confused since she has been doing so well--I noticed that auto mode would kick in even when she was breathing on her own and not hitting the low respiration rate that is suppose to make it kick in. I explained this to the doctors but they said it was because she was breathing too swallow but the rate of her breaths did not show they were too shallow. I guess I am just confused on how the machine works so the medical team decided to take her off auto mode and let the machine completely breathe for her again which is so frustrating to me since she will just ride the machine and will not breathe over it when she is on it. I am also frustrated because I keep getting conflicting reports and advice on what the doctors want to do--as a parent it makes you feel like they have no clue what they are doing and are just unorganized. One team says the MRI showed she had a decrease in the ventricles while the neurologist show there was an increase. I then have a doctor come in to tell me the results of the MRI but I was pumping so she said she would come right back--did she? No--instead after waiting 2 hours for her to come back I find out she went home instead. I hate days like this--when I feel no one is listening to me and no one is talking to me. Anyways, this morning I have the strict nurse again but she gets things done as well so I told her all my concerns and frustrations and she is going to ask questions for me in the rounds and hopefully I will get some answers. She already confirmed for me this morning that neurology said there was an increase and that the shunt is working properly and that there is no infection showing as of yet. I know though that God's hands are taking care of Autumn and even if the doctors will not listen to my voice that God is listening and I have to continue to trust in his healing hand and his faithfullness. I need prayer today to not get discouraged and to feel God's presence with me throughout the day. This is when I really wish James was here with me--he also needs prayer to get better and not miss anymore work--he has been sick for 2 days now.

3 days in a row

So, Autumn is still doing really well. She will desat a little when they turn her but other than that she just lays there breathing over the vent. They plan to take her PICC line out tonight or tomorrow and will hopefully extubate her on Monday. So, the only things she will be hooked up to is the monitors, her feeding tube, and probably a nasal cannula if she is good and does not desat when the vent gets taken away. I feel like I need someone to wake me up from this dream--just last week she is not doing so well and now she is making great progress-thanks to God. They have the MRI report but there are no neurosurgeons that have come by to talk to me about them yet and the nurse practioners don't feel like they can expain it to me well enough--maybe I will get more info tomorrow during rounds but if not then I won't know the results until Monday. I think they were good though since they want to take the PICC line out--they were waiting in case we may have to do the trach and to see the MRI results. If she continues this good path maybe we will be home before Thanksgiving but I am trying to not get my hopes up too much.

Another great day

Autumn had another great day today--no desats whatsoever--first time ever I think! She is still really sleepy so they are trying to wean her off the methadone and she has to be off that before they will extubate her. We are still waiting on the doctors to confirm the MRI results and they may have to do another one since she moved a lot in the first one-we'll see. I do know her ventricles were enlarged so they did a shunt tap to see how much pressure is in her brain. The pressure is low so they know it is not from the head but the part of the shunt in her stomach may not be working properly. They were going to tell the neurosurgeon the results and see what he has to say. They also may take the PICC line out if the MRI results look good. Still heading in the right direction.

Wednesday update

Well, no meeting happened today but we are thankful we have time now to see how Autumn is going to improve or not before making any decisions on her care. The doctor from Scottish Rite hospital who will be taking care of Autumn once she leaves Children's wanted a MRI done today and he wants to see the results before making his recommendations. Well, he will also be out of town for 8-10 days so the meeting will not happen until he returns. They sent her this morning for her MRI and should get the results back tomorrow. She had another great day--did not have to get bagged any today even when they moved her around so much for the MRI. She did desat a few times but came back up on her own and she also was on morphine so that probably caused her to desat more--she also let the vent breathe for her a few times today--she was being lazy. :) She slept all day so it was an uneventful day which are the kind of days we like.


The renal scan came back and everything looked fine except her left urethra was a little dilated so they are going to just keep an eye on her diapers to make sure there is plenty of urine in them. They decided to keep the PICC line in just in case she will have a trach done--they said the risk of infection is low when it is not being used for much and right now it is just being used for fluids and nothing else. They keep changing their minds so it may change again tomorrow. We are not sure their plans on the vent and when they will extubate her--we have to ask during rounds tomorrow if we are there. Everything should be smooth sailing until we meet with the doctor unless Autumn decides to act up and makes things worse. ;) We need this time of relaxing for now.

Auto mode

Yesterday about noon they put Autumn on auto mode on the ventilator and she started breathing on her own right away. She even had less desats yesterday then when she was on full mode on the vent. She only had to be bagged twice yesterday so we were so blessed she is doing so well so far. We have not checked in yet this morning so not sure how she did over night. I am sure there will be some set backs and more desats but we are still moving forward at this time and it feels so great. I just sat there watching all the purple marks on the vent yesterday everytime she would breathe and I was such a proud mommy!!! My God is great and he does hear our prayers. My fasting went great yesterday and it was nice to feel so intuned to what God is saying to me--I just keep praying I will not get discouraged if she does have set backs and to expect them. I am not sure when they will want to take her completely off the vent but I hope they can today so maybe James can hold her again before going home on Thursday. We still do not know if the meeting will happen today but if not then they are going to have to wait 2 more weeks before we are both back in Dallas at the same time. I do know now I don't want to do the trach unless she really starts doing bad again and there is no other options but the trach for her to breathe--God has given me peace and clearity on that issue now. I have decided I would rather have her in the hospital longer than just to get her on the trach so we can get home as long as she is improving on her breathing but if she goes back to having to be bagged all the time then we will do the trach but I can see God is still doing his work in her. Thanks to everyone who also joined us in prayer yesterday and continues to pray everyday for our family. We love and appreciate you all.

Prayer fast

"Is not this the kinf of fasting I have chosen:to loose the chains of injustice and inutie the cords of the yoke, to set the opressed free and break every yoke?Is it not to share your food with the hungry and to provide the poor wanderer with shelter-when you see the naked, to clothe him, and not to turn away from your own flesh and blood? Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here I am." Isaiah 58:6-9

Today I have decided to fast and spend the day in prayer for Autumn. I want to clear my mind and just spend the day really listening to what God wants to say to me and to get prepared for our meeting tomorrow with the doctors. I want to appeal to God the seriousness of my heart for His will to be done in Autumn's life even if that will is not the same as mine. The last few days I have been wondering if I really hear God when he speaks to me. Some people seem so sure of when God speaks and so sure of His will in their lives and I want to know God enough to know when it is Him speaking to me or when it is me trying to convince myself to believe what I want. I believe and have this peace that God is going to heal Autumn's brainstem and we will not have to go down the path of a trach. When we were told of Autumn's spina bifida I knew it was not His will to take it completely away and I knew he wanted us to accept her condition and that we would have a long journey and she was going to have difficulties in life. I accepted that she may be paralyzed and have bladder/bowel control issues--I could see my future in taking care of her with those problems. I just can not see the same when it comes to the trach--yes, I questions myself if it is God speaking to me about it or if it is me not wanting to so badly for her to not get it. I just keep reading the verse in my Bible about the demon-possessed girl and her mother-Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour. Matthew 15:28 I never felt the need to pray for Autumn's healing with the spina bifida conditions because I really felt it was not God's will to heal her of it but I feel I need to have faith about God healing her brainstem and ask for healing. It is frustrating because I do know how powerful my God is and that this is such a small miracle for Him to perform but I also do not want Him to heal her if that is not His will. James and I have given Autumn completely into God's hands to do with her as He plans and will not question anything that happens or does not happpen to Autumn. Right now God wants us to trust Him and know that he can heal her if he chooses but if he does not choose to then for us to not lose faith in him and to continue to praise him and trust him. I also want to be in prayer today about our meeting tomorrow (if it happens) and that James and I will stand our ground with what we think is best for Autumn and her care. I want to make sure we ask the right questions and do not feel intimidated by the doctors since there will be several in there. I hope we have peace with what they tell us and what we decide.

I know everyone is eager to hear how Autumn has been doing since Saturday and I apologize for not posting sooner. Sunday morning around 2am they finally got her pain under control and I don't think she has been in pain since. Her blood pressure has been looking better and I think we are taking forward steps again. She is at full feeds and not getting anything through her PICC line anymore so they may try to take it out today so it will not become infected. We are ready for her to come off the ventilator since her pain has been better. They said if her next blood gas comes back looking good then they will put her on auto on the vent to see if she will start to breathe more on her own. She has been breathing over the machine but still likes to ride it and we feel she needs to be pushed to get off because she is becoming way too dependent on it. So, for the next few days she may only have a tube to feed and can finally get rid of everything else is she does well--we can't wait for the tape to be removed from her face so we can see her better. Yesterday she was awake ALL day long and just looked around and was very comfortable. She still has desats but they do not go down too low (occasionally they will and she has to be bagged) but most of the time she comes back up on her own. It is getting harder because we want to pick her up so badly to talk to her and play with her--maybe that will happen when she gets off the vent and hopefully God will show her how to breathe on her own and not rely on machines anymore. Yesterday she turned 4 weeks old and weighed 7 pounds even. She is getting cuter by the day--there are a few new pictures on her website. http://www.autumn.haleydean.com/

Painful day

I got at the hospital about 11am this morning and Autumn was resting peacefully. She was wide awake though by noon and stayed awake for an hour and I just talked to her and sang to her. I went to eat my lunch and pump and came back to the room around 2pm. Well, she was wide awake again but then she started desating (going down on her respiration) like every 2 minutes but not real low. They did not know why she kept going down on her breathing. Finally they decided to move her from laying on her back to her side and swaddled her and she stopped desating. My cousin Robin came to visit and then she started it again but this time she would try to cry and whincing her face up. This kept continuing so they started giving her Morphine to help ease her pain. Later Aunt Jen even came to visit and by this time they had given her Morphine like 3 times but she still seemed like she was in pain and her blood pressure was high. So, they gave her medicine to bring her blood pressure down which worked but the pain still is not easing up. She had been awake from 2pm today and was still awake when I left at 11pm. She just can not get any rest because she is hurting so badly. They turned her fentyl drip down before I left and was going to start the methanol (sp) so maybe that will help her more--they even discussed maybe trying to give her some valium as well. She was still desating some when I left but not often and did not go down very much and would come back up on her own. It breaks my heart to see her in pain and there is nothing I could do to help. I wanted so badly to just pick her up and comfort her. All I could do is try and hold her little hands so she was not grab the vent tube--I tried singing and rubbing her head but nothing seemed to comfort her. I was debating if I should stay over night or not but could not stand seeing her all night in pain like that with nothing I could do to help so since her desats were less frequent I decided to head home. This is when I really want James to be here because he can be there trying to soothe her because it is hard for me to do when I can't hold her--so frustrating. He is having a hard time being gone so please keep him in your prayers that he makes it through one more night of working and that next week he can make it through his 8 days of working without a day off. I pray tonight Autumn will finally get pain relief and can get some rest.

My solitude day

Today was a day of solitude. I spent the day with Autumn all alone and then came to my brother's to have a whole night by myself. I love being by myself though so I think it has been really good for me and I felt peaceful and content all day.

Autumn slept all day but woke up for about 5 minutes and looked around while I talked to her--it was great to finally see her eyes again after a week. I had a busy day of having different people coming in and out of her room talking to me.

I first met with the neurology social workers who gave me resources about getting on Institutional Medicaid so I applied for that today but ofcourse they need more information so I have to gather all the paperwork together and James is trying to get us approved for SSI which will automatically approve us for Medicaid. We make $700.00 too much each month to get approved for Medicaid right now. It is a headache trying to figure out how to get financial help while also trying to deal with all of Autumn's medical issues at the same time.

Next they sent in the Pain Management doctor in to talk about plans for Autumn. They are going to put her on a new pain med that will not supress her respiration as much and they may also give her some morphine because it is longer lasting then the fentyl (sp) she is on now. They will start the new pain meds tomorrow and then see about putting her on auto so they can get her off the ventilator. Today she kept trying to chew on the tube so I think she is getting aggitated having it in her mouth and wants it out. I also noticed she is breathing over the machine a lot more so I think she's ready but she still needs the pain meds. She did have some episodes today and they even had to bag her even while she is on the ventilator so she is just a mess. :) I think she is going to be laid back and lazy like her daddy because she loves to ride the vent and not breathe (too much work for her).

I then met with the Rehabilitation doctors about her long term care. They did say she will need occupational, physical, and speech therapy when she gets released and I will have to talk to social work about getting that set up in Midland. They still can not tell us what problems she may have but say that right now it looks as though she has been moving her legs well. They also are going to order some bladder x-rays to see if she is emptying her bladder on her own or if it is getting so full that it is leaking out. They said even is she does have control now that she may not have control later but once again that is a wait and see like everything else relating to SB is. They long term care meeting is now being set up for Wednesday to get together with all the doctors about plans for the future. This meeting should also include the dr. from Scottish Rite Hospital since all of our follow up care will be with them.

The pain management dr. did tell me that a trach is the safest thing to send her home on because if she stops breathing we can just hook her up to the machine to breathe for her and that it is not as bad as it seems. The idea of a trach is starting to sound better to me now so that maybe we can get home before Christmas and finally begin our lives as a family.

Today I was able to just sit in peace and think about all the blessings in my life. There are some mothers in the ICU that are having to go through similar things as we are and it is with their first born child. They don't know what it is like to go straight home with their babies and get to hold and cuddle and feed and dress them. I am blessed I was able to do that with my first two children. I also know that I took that for granted with my first two and so I am blessed that God is now allowing me to really savor everything with Autumn. I look forward to getting to change her diapers (I've changed only 3 so far). A nurse put some pink socks on Autumn's feet the other day and I was so happy when I saw them and saw that there were no IV lines or monitors on her feet for a day. There are some days I only get to see one side of Autumn's face so I am blessed the days I can see her entire face. I am blessed for the hour and a half that I was able to hold my daughter because it is better than not being able to hold her at all. I am blessed that there is hope Autumn will be able to come home but for some mother's there they have to hear that their child may not make it home. It also opens my eyes that anything can happen to Madison and Gage as well but God has kept them healthy to this day and I am blessed for that. I also so blessed for the man I married--he loves us so much. Most of all I am blessed that God chose to adopt me as His daughter and because of that I know everything will go as He has perfectly planned.

Friday morning

Yesterday was another uneventful day--Autumn slept all day and I was determined to stay until she woke up but I decided to give in at 6:00pm so I would not have to drive in the dark. James went home but I think it was good for me to spend the day at her bedside alone. I felt like I bonded with her some even though she never even woke up. She now weights 7 lbs. 2 oz. so she is getting bigger and chubby. She is back on tube feeding and they were going to try to wean her off the pain meds yesterday but she is still showing signs of being in pain so they promised they would not turn her meds down anymore as long as she is hurting. They may try again today to see how she does. They also want to put her on auto on the ventilator again but are waiting until she has more pain meds out of her system. She had a few more apnea episodes yesterday because of the pain. Today they are going to do another chest x-ray just to make sure her lungs are still clear (it is a routine thing). Today I will just sit by her side again in hopes she will wake up and look at me today--I don't think I've seen her eyes in a week so I miss her looking at me.

no meeting

We were not able to have our meeting today so we will be having it one day next week. Autumn is still completely out of it so nothing new with her.

James and I were going to take a CPR class today but the class had been moved so we are going to try to get it in next week. We just hung out at the hospital today and spent time together which was nice since it will probably our last time alone for awhile.

We received an exciting call from the 200 club of Midland and they have received donations of $1,200 for us which always touches our hearts when strangers want to help us out. James' sister also sent an e-mail out at her work and there are more people who are wanting to help us out financially. God continues to take care of us. James has used up all of his time so anytime he has to take off now he will not get paid for it so these donations are going to really help us out when those times come.

We did some research today at the library on tracheostomies and feel a little overwhelmed that our lives are going to be changed drastically if that is the route we have to go. I'm still in this fog that I can't believe this is my new life now. I will be here at my brother's house doing normal activities and then stop and realize I have a newborn baby laying in ICU and it still seems so unreal. Also knowing what it will take if she gets a tracheostomy just has me thinking this can't be happening to us--I can't imagine what it will be like having a nurse in our home 8-16 hours a day helping take care of our daughter or what it is going to be like to have to get rid of our animals or what kind of life Madison and Gage will be living from now on. I wonder about if we will ever get to take vacations anymore or how I am going to just do the everday things like going grocery shopping. I know millions of people have special needs kids and they cope and they are still able to have lives but for me just learning it all and trying to adjust to it all has me thinking about it non-stop. I know I just need to take one day at a time but I have one of those minds that want to figure it out now and God is still working on me about that. I have prayed and given Autumn into His hands and I KNOW he will take care of her and us but I still struggle with asking God how it is going to work? I have learned to stop asking why so now God is trying to teach me how to stop asking him how. I know He wants me to just trust His work and do whatever He has given me to do without complaining or worrying about it. Boy, this is going to be a hard lesson for me to learn and I am sure I will argue and fight with Him about it the whole way through but in the end He will make a better person out of me. I still thank you Lord for everything you have given me and for always wanting to show me more of you-I feel so loved by You.

www.autumn.haleydean.com

Wednesday

Yesterday the PIC line surgery went well. She now has a line that goes from her chest to her arm so she will not blow anymore veins. When they did the PIC line they had to put a turnicut (sp) around her arm (under the armpit) so she now has this red makr all around her arm and they said it will probably bruise. My poor little girl has already been through so much in 3 weeks and it is just getting started. We are going to have a meeting with ALL the doctors caring for her to talk about the long term prognosis for Autumn. We are hoping to have it this afternoon but not sure if all the doctors will be available so we may have to wait until sometime Mon-Wed. of next week. They have pretty much come to the conclusion that the decompression surgery has not worked and so we need to decide on the next step. We are going to discuss the treacheostomy vs. an apnea machine to send her home on and which will be best for her care and what we will be best since we do not have the emergency resources we need in Midland in case something went wrong while we are home. I am feeling a little more empowered that we are going to have the chance to really discuss her care and make a decision and not just them telling us this is what has to be done. If we do the tracheostomy that means a minimum of 6-8 more weeks here and so things will have to change like Madison probably coming to school here and me getting rid of my bullmastiff. We would also have to have nurses come to the house when we do get home so it would be best for me to get rid of my dog. I am heartbroken at even the thought or it but I know I have to do what is best for us as a family for Autumn's care. I am also nervous on how I am going to handle a special needs baby and still have time to take care of Madison and Gage and not let Autumn consume my life--it will be a balance we will have to all get adjusted to. We have a VERY long and challenging road ahead of us but for some reason God chose us to walk down this path so we have to embrace it all as a family and figure out how to do it. I will update when something new happens--right now Autumn is still knocked out and just laying there peacefully.

PIC-line (not sure correct spelling)

Well, they decided to get Autumn into surgery at 9:00am in the morning (Tuesday) to get a PIC line on her so she will not keep blowing veins and will have a good IV line. This means that they will take her off auto and put her completely back on the ventilator and knock her out once again (and she was just starting to wake up.) They will also have to give her a medicine that will paralyze her so they can do the procedure but assured us that it is done rountinely there so it sounds worse than it is and she should recover quickly from this procedure. Please say a little prayer that they will be able to get one in because last time they couldn't get it and it will keep her from being poked and bruised so much.

Monday report

Well, nothing really new to report about Autumn today. She is still on the ventilator and they decided to put it on Auto to see if she will start breathing more on her own. She continues to blow her veins and James said they had to stick her about 9 times trying to get a vein and then decided to put one back in her head again--feels like 2 weeks ago all over again. They have talked about doing a central line but they have to do that in the O.R. and they did not have any openings today so they are going to hold off and hope this IV will work until she is able to get rid of her IV's again. We'll see.

It was great to be home but I know I did too much today. I did not rest all day so I am exhausted tonight and still did not get everything done that I wanted to. Gage tested me all day as well and finally I sent him to bed early after he got mad at me for the 20th time and slammed his bedroom door. He is such a smart little boy and tells nana about things I let him do (which I don't) and then he gets away with it with her and then gets mad at me when I don't let him do what nana lets him do. Madison was great for me today so I was grateful for that. :)

Home Sweet Home

Madison, Gage, and I are back home but I will just be here until Tuesday. It has been 5 weeks and 4 days since I had been home and it felt weird seeing my house again and animals. Everything looked so different--I also forgot how to work our remote at first but things are coming back to me now. I had over 25 pieces of bills to sort through tonight and tomorrow I have a huge list of things I need to try to get done before flying out Tuesday morning. I wanted to just be able to relax with the kids but not knowing when I will be able to return I need to make sure I get all the medical bills in order and things taken care of before I leave once again. It will be sad to leave home again but I also am already missing Autumn and want to be by her side again. Today she is still pretty much knocked out. They do not think they are managing her pain well enough and are trying to get her feeling comfortable. It took 3 nurses just to turn her today since moving her is causing too much pain to her and she clamps down on the breathing tube. She has been sleeping most of the time and they decided to not take her off the ventilator until they know she is not in pain anymore. So, I guess this was a good time to come home and maybe when I get back she will be in less pain and they can start weaning her off the ventilator so we can see if she will continue her apnea episodes or not. Well, I am so sleepy and feeling a little overwhelmed tonight so I am going to take a hot bath and finally get to sleep in my own bed!!!

surgery update

Sorry I am just now posting but we were up early this morning and after Autumn's surgery we came home, took a nap, and I have been too tired to write until now. The surgery went well and did not take as long as we expected. We did not get a chance to talk to the neurosurgeon to see what his thoughts were but maybe we will get a chance this weekend. We are not sure how long it will take to find out if the surgery helped with the apnea or not. Autumn is still ventilated and drugged up. The cut was pretty large so they want to keep her as comfortable as possible for now. They may try to start weaning her off the ventilator tomorrow. It is going to be a busy weekend here since both sides of the family are here and it is my niece's birthday tomorrow. There may not be too much to report the next couple of days but things change so aften here you never know. :)

Decompression surgery

In my last post I forgot to explain what the decompression surgery is for those of you who do not know. They will go in and take some bone off her first 3 to 4 vertebrae to give her brainstem more room to expand. The Chiarii malformation causes her brainstem to be pulled into her spine so this surgery hopes to give it more room to expand so the spinal fluids can flow better and there is not so much pressure pulling her brain down. They could damage more nerves and that would affect her arms and hands but they said it is rare to have more damage. It can also cause her spine to be more easily injured since some of the bones will be missing. Recovery time should do fairly quickly since she is so small and does not have much muscle to cut into. Well, off to the hospital to see Autumn before surgery.

Friday morning surgery

Autumn will be having a 3rd surgery at 7:30a.m. in the morning. The neurosurgeon said the apnea could be caused from 3 things. #1 it could be that her shunt is not working correctly but they did an CT scan this morning to check and it is working fine. #2 that it is caused from the Chiarii II malformation and #3 that she just has a bad brainstem. So, really our only options right now is try to do the decompression surgery and hope that helps with the Chiarii malformation or to go ahead and do a tracheotomy on her, The doctors said the tracheotomy is complicated to take care of and we would have a week or 2 of training to make sure we can care for it and once she gets it she could have it all of her life or maybe a minimum of 2 years. So, they want to try the decompression surgery first just to see if it will work before having to do the tracheotomy. If the decompression does not stop her apnea episodes then we know it is because she has a bad brainstem and there is no cure for that--just to treat the symptoms which would be to do the tracheotomy so she can breathe on her own and go home. We asked how common it is for spina bifida patients to have these Chiarii complications and they said less than 10% have problems so Autumn really has a bad case of spina bifida and they said they only have about 1 to 2 cases a year with children having problems with the Chiarii malformation. They said if the decompression works then we will be here a minimum of 1-3 weeks but if it does not work then we are probably looking at being here a minimum of like 6-8 more weeks. So, please be praying this will work because we can not imagine how we are going to do this for another 6-8 weeks!!! I will say the doctors know there is a chance for this surgery to work or they would not be doing it but they are not very hopeful that it will make a difference--they are doing it so there is not a what if question later and to try to avoid doing a tracheotomy on Autumn. Also, they decided to go ahead and give Autumn a blood transfusion this evening before her surgery tomorrow. We did find out she is A positive so that means I should be able to donate blood for her in the future if she needs it but James can not since he is B positive. Well, the news we received today was not too hopeful so we are praying God really steps in to heal Autumn so we will not have to go to option B after this surgery. Also, the doctors could not tell us what brain damage she may have as she gets older or if she will even have any. They still have not been able to tell us the extent of her nerve damage but did say they had not seen much hip motion out of her. She does pull her knees up towards her body but when you stroke her left foot she does not curl her toes like she is suppose to. I think it hit both James and I today that this is going to be a long road and things are more serious than we first expected them to be. This is the toughest thing we have ever had to go through but I know God is making us stronger as a couple and as individuals. I love my husband and feel so much closer to him more today than I ever have before. We are dealing with the most stressful situation we will probably ever go through and instead of getting stressed at each other we have pulled together to truly work as a team and rely on each other. God gave me an awesome man to love and I feel blessed that we are going through all of this together. Please pray,pray,pray tomorrow morning and the next several days that we see God's hands taking care of our baby girl and see improvements so we can tell of His glory in our lives and be together as a family finally.

Thursday morning

Autumn did a little better yesterday--she is taking small baby steps towards getting well. She was able to suck on her pacifier without having an apnea episode and is getting better about holding her pacifier in her mouth. I was able to hold her for an hour without her apnea and James and his parents were able to hold her for about another hour. They even turned her oxygen down to 26%. They had to add some calories and protein to the breastmilk because her blood levels are a little low. They are going to see if she is anemic and if so then she will have to get a blood tranfusion. Her back closure is slowly looking better and she has had physical therapy and speech therapy come in and work with her.

Yesterday I was very depressed and I am feeling the stress from being here and so is Madison. She is having a hard time being away from us and is ready for things to be back to normal. Please keep her in your prayers. I am going back home on Sunday and leaving again on Tuesday so that Monday I can spend time with Madison and Gage and have one normal life day--I hope the trip rejuvenates me and the kids to last a little longer. James will be heading back to work next Thursday so that is when it will really get tough for me to be here doing it alone for 4 days each week. We are hanging in there day by day and know one day there will be an end and we will be back home.

Tired of...

going to the hospital to just stand and watch my daughter lay there and not being able to pick her up and hold her.

knowing Autumn is mine but not feeling like it because bonding does not come easily when you have only been able to hold your daugther for about 30 minutes of the 16 days she's been born.

crying to God every night to give us the miracle that Autumn can breathe without problems and we can go home.

laying in bed by myself everynight feeling depressed and lonely.

the drive back and forth to and from the hospital everyday.

not being able to see Madison and Gage everyday.

of feeling like a useless mother because I am not home taking care of Madison and Gage and here there is nothing I can do for Autumn but watch her sleep and cry.

spending money on meal cards, parking, airplane tickets, and gas.

pumping every 4 hours around the clock.

looking at all the baby clothes I have for Autumn to wear and not knowing when she will be able to wear them or if she will have already outgrown some of them by the time she gets to wear them.

not knowing...about everything.

people feeling sorry for us...I hate feeling pitied. Even though I am depressed and tired of this journey--God gave this to us so please don't feel sorry that God wants to mature us so that He will be glorified through what we are going through.

talking to people and explaining every detail over and over again---not to offend anyone but I am thankful everyone is concerned and has been praying around the clock for our Autumn and everyone just wants to show us they love us but emotionally I am tired to talking.

being an emotional rollercoaster having one good day and the next just wanting to sleep and not talk to anyone.

hearing all the sad stories of all the babies at Children's and then wondering why I am feeling depressed because we have it so much better than most of the people up there.

I just needed to express feelings I am going through on this journey but I also know I have a mighty God that is taking care of us and one day this will all be behind us--just wish that day will come sooner than later. Please continue to pray for our whole family--we really need it!!!

Tuesday morning

We found out the encephalopathy is the term they are using saying that Autumn's brain is immature and that is why she is having all these apnea episodes. We still do not know though the plan for treatment and how long it may take for her brain to mature. We are hoping to get those answers today. Last night they checked to make sure Autumn does not have any infections in her body because that could be a reason she is not doing as well but there are no infections so that is good. So now we just wait.

Monday update

Today I had my 2 week check-up and I am healing well. I still can not drive though for the next 2 weeks so I am bummed about that and I have to go back in 4 more weeks.

Autumn is still not doing well. They took her off the CPAP so they could do the sleep study. They had planned on doing it for 6 hours but Autumn was having too many apnea episodes and getting really tired so they stopped after an hour. They said though they were able to get enough information to see that it is not an obstruction in her airway and that it is a neurological problem. We have to now talk to the neurologist about their plan on what to do next.

The EEG had showed results that she has encephalopathy but the ICU doctors really could not explain to us what it was or the severity of it so we are waiting to talk to the neurologist to find out more. We researched it on the internet and it literally means disease of the brain and could be caused from many different things and there are many different types so we are waiting for the doctor to explain it to us before getting concerned about it.

We also had a wound care nurse come in to check Autumn's closure on her back. She said it is not healing like she would like it to so they are trying another type of dressing and she is going to talk to the neurosurgeons about getting a nutrition work up done because they may need to add some protein to her breastmilk. They said protein helps to heal faster so hopefully it will heal faster once they do that.

I really do not see us leaving the hospital anytime soon. James' parents were able to make it to see Autumn and they both were able to hold her for a few minutes today but she started having her episodes so they had to lay her back down. She has seemed really tired these past couple of days and has been sleeping a lot more. It is going to be a long road for us--please pray to give James and I strength and figure out how to balance our lives in Midland with our lives here in Dallas. James will have to be going back to work soon and I know I need to make a trip home to have some type of normal routine for both the kids and I even if it is just for a day or so. Financially we are going to be feeling it with traveling back and forth and we may have to take shifts coming and going so we may not see each other for the next few weeks. I know God is going to work it out like He always does but emotionally it is still a big strain on the whole family.

Sunday morning

Yesterday was an eventful day. We were able to hold Autumn for the first time after 12 days of watching her lay there. James was the first to be able to hold and cuddle her. Madison, mom, Grampy, and Gage were all able to hold her right before they left to head back home. I waited until everyone left to take my turn. Aunt Jen even made it in time to hold her before they moved us to another room in the ICU.

Autumn continues to have her apnea episodes so they put her on a CPAP which is just a different oxygen hook up. They will run the sleep test tomorrow and she what the results show. They said if it comes back as neurologocal then they do not think the decompression surgery will work. They think she will just have to wait to let her brain mature enough until she can learn to breathe without holding her breath.

My brother added pictures to the website so always look for any news ones. www.autumn.haleydean.com

morning update

James called the hospital this morning and Autumn had 4 more apnea episodes last night. They said she was just resting when she had them so we are stumped to know what is going on. Her EEG came back normal and showed no signs of seizures. So, no telling how long it will take to figure back or how long we will be here. They are going to do the sleep test Sunday night since they are still waiting for the acid reflux results to come back first.

Friday update

Autumn had gone about 36 hours without an episode but when she was eating from her tube this afternoon I was making her take the pacifier to work on her sucking like the therapist taught us and she stopped breathing. She conitued to look around and still suck even through her episode but had to get the oxygen bag put on her. So, apparently she does not know how to coordinate sucking and breathing at the same time. They did the EEG today and hooked Autumn up to over 30 lines to her head and monitored her for an hour. They said they would know the results later today probably. The urologist came in and had great news for us. He said no more catherizing her because she is empting her bladder on her own and we will not have to worry about catherizing her at home either. We need to do a follow-up appointment with them in about 6 weeks though. I was really glad to hear that news--that was what I was dreading the most. We left the hospital today around 2pm so not sure if they have started the sleep test or not. If Autumn blows another vein they are just going to take her off the IV because she is already eating 24 cc each feeding and they hope to up it more so hopefully no more pokes or surgeries for her.

We received another blessing from God today. Last night was the police banquet and they give out door prizes. You have to be present at the banquet to claim your door prize unless you are working on duty. Anyways, James' name was called for a door prize and James' cousin stood up and explained to them that he was in Dallas with his baby who is in the hospital with spina bifida so they said he needed the door prize and he won $500.00 cash. God continues to provide our needs. I had not tithed this month because we have been away but saw that our church has a tithing online and so just yesterday (day of the banquet) I sent in our tithe. I was tempted to spend our tithe on bills but knew I needed to just trust God to provide for our needs and he always goes. God is so good and faithful.

Friday morning update

I just talked to James and he said Autumn did not have any apnea episodes over the night so it has been over 24 hours since her last one. He said she slept well last night and only woke up for her feedings and that she was not fussy last night. They are going to do an EEG today just to make sure she is not having any seizures. James was concerned she may of had one during an episode because she starting hiccupping really fast and her eyes rolled back and then she stopped breathing so he wanted them to make sure she was not having any. They should start her sleep test today. Remaining hopeful they will fix the apnea soon and we can go home within the next 2 weeks. Keep praying!!!

A good and uneventful day

This morning when I got to the hospital they had already started the acid reflux test on Autumn. They put a nasal tube in and everytime she eats, sleeps, gets irritable, etc. then we push a button so they can see what her PH levels are depending on what she is doing. They will run this test until 9:00 in the morning. In the afternoon they came in to start the sleep test but they wanted to put 2 more nasal tubes in so the nurse told them no because Autumn would not be able to breathe if she has 3 nasal tubes in, oxygen, and a feeding tube in her mouth. So, they are coming back tomorrow to start the sleep test. We also have not heard any results about the urological x-rays. Autumn has not had any apnea episodes since last night so she did well today but the whole time I was there she did not wake up or open her eyes at all. They started her back on feeds through the tube and she is up to 17 cc now. A speech therapist came in and showed James and I how to work with Autumn and teach her how to suck correctly. She wants us to work with her about 3 times a day for 10 minutes each time to get her sucking on our finger or her pacifier and make sure she is doing it correctly and taught us how to get her to do it correctly and showed us how to tell if she is sucking effectively or just chomping and working too hard. She said she would be in about twice a week to see how things are going. The nurse was concerned today because where her shunt was put it was a little red looking so she was going to have the doctors come look at it and make sure it has not malfunctioned or anything. Also her back closure was leaking some yellow substance so she wanted to doctor to look at that as well. James and I both left around 4:00pm today and went back to Mesquite to take a nap and have dinner and he is just now on his way back to the hospital so he will be calling to give me an update if there is one. Tomorrow night James will stay the night here with me because there is another baby in our room as well and that mom wants to stay the night for her baby's surgery. I think it will be a good break for James even though he hates to leave and I know Gage has been missing him so it will be good for him to spend time with Gage before they leave on Saturday. Gosh, I am going to miss the kids next week when they are gone but at least they will be back next weekend.

Thursday plan

Right now Autumn is in radiology and they are checking her urological functions. Sometime today they are going to do the sleep test which they will monitor her for 10-12 hours to see her apnea episodes. Once the sleep test is over then they will come up with a plan on which direction to go and what steps to take. This morning an occupational therapist and physical therapist came in to look at Autumn. James said they just talked among themselves and said they would give us information before we go home on what we need to do about therapy. I am not sure if they really checked to see about her level of function at this time. It is crazy how many different doctors and experts have come by to see Autumn since spina bifida covers so many different areas of the body. Before we go home though they will overload us with all the information we need and all the follow-up doctors we will be seeing.

Wednesday update

Today was not too eventful. Autumn has not had an apnea episode since this morning. They mainly occur when she nipple feeds so they are tube feeding her again and doing it over a 30 minute time period so she will not apnea. She also has more episodes at night and when she gets mad. She does have a temper like her momma and I think she may be a little strong-willed as well. She likes to lay one way and today she kept getting herself face down trying to turn her face the other way. She would get so mad at us when we would make her turn her head back and she just throws a fit and cries which also makes her have apnea episodes. She also took out her feeding tube last night because I guess she did not want it anymore. She is such a wiggle worm and is always trying to push herself forward or turn her head or pull on tubes. It amazes me how well she lifts her head only being a little over a week old.

The ear, nose, and throat doctor came in today. They put a nasal scope down Autumn's throat to look at her vocal cords. They said everything looks great and they do not think there is an obstruction with her airway. They are going to do a sleep test on her either tonight or tomorrow night so they can see the episodes for themselves and monitor her. The sleep test will let us know for sure if it is an obstruction or if it is a neurological problem. If they say it is an obstruction then they will take her to the OR to have another scope done that goes past the vocal cords and will look at the airway. If it is a neurological problem then I don't really know what the next step will be--not sure if they will do the decompression surgery or not. I just hope they find the problem soon so we can get it fixed and home asap.

They're Back

We are on a rollercoaster ride now. James just called and said last night Autumn had several apnea episodes. They are going to send in the nose and throat doctors today to evaluate her. They said it could be acid reflux so that is the next thing they are going to look at before jumping to do the decompression surgery. The doctor said he does not even think the decompression surgery would make much difference anyways because it would not relieve much more pressure than has already been relieved. I just know we have to get this problem solved before there is any way we would take her home. Hopefully we will get more answers today of why she keeps having these episodes. Also, the picky nurse is back today so I don't plan hanging around the hospital very long today.