September 15th...I will be off to Dallas

I talked with the nurse of my OB in Dallas today. I was suppose to see Dr. Gunby but now they said I will be seeing Dr. Payne. They are in the same office so no telling who I will actually be doing my c-section. Anyways, my 36 week appointment is set for September 16th. James and I will drive to Dallas on the 15th and then he will fly back to Midland on the 17th and leave Gage and I in Dallas until Autumn's birth day is here. :) I can't wait for that day to come. If they deliver me at 38 weeks and Autumn is only in the hospital for 2 weeks then we will probably be heading back home on October 12th (we will stay through the weekend for my niece's birthday). If though things don't go as I plan them (which they probably won't) then we will be there longer. Madison will be staying with mom while I am Dallas until Autumn comes and then she will probably miss 2 weeks of school to be there with the whole family. James' mom will probably come back to Midland with us to help out a couple of weeks to help me as I recover from my c-section and helping take care of the kids. We know we will have to go back to Dallas 2 weeks after Autumn gets released from the hospital for her follow-up appointment. Plans will probably change but this is the game plan as of now. :) Only 7 more weeks until I leave!!!!

My little batman is still sick

My poor baby boy is still sick. He has not had any diarrhea or vomiting since Wednesday morning but he has NO appetite and is completely lethargic. Wednesday he has a half of a piece of toast, Thursday had another half, and today has eaten NOTHING!!!! He is drinking milk and urinating so that is good. The doctor said it may take up to 5 days to get his appetite back but as long as he is drinking and not having more diarrhea or running fever then he should be okay. Today he even took a 5 hour nap and then 3 hours later he is in bed again for the night. I guess sleep is what his little body needs right now. He also has already lost 2 lbs. since Sunday and since he is so small he can not afford to lose anymore. He just has no energy in his body right now. So please keep my little super hero in your prayers. I pray he wakes up in the morning and is ready to finally eat.

I will also give a quick update on Madison as well. Her chin has bruising all around as well as one of her knees. The scrapes are starting to turn into scabs. She is still limping from being sore and having the injured toe. She went to a family reunion with my parents this weekend so maybe she will look much better when I see her again. I just hate looking at her injured face--makes me sad. Goodness, makes me wonder how I am going to handle seeing Autumn with all of her medical issues. I guess God is trying to get me prepared now with the injured daughter and sick son-as a mom I just want to be able to fix my babies and not have them feel pain or sickness but I know there is nothing I can do but love on them.

This was my day....

My day started at 4:30am this morning when I got up to let the dogs outside. I walked by Gage's room and smelt a horrible odor. I turned on the hallway light and looked inside to see Gage was sound asleep in a puddle of diarrhea. So I had to put Gage in the bath since he was covered from head to toe. I woke up James to help and he was bathing Gage as I cleaned up the mess in his bed. As Gage was in the bath he started vomiting and then had to diarrhea some more so we got what we could cleaned and then back to bed. Gage has not been sick since but he has been lethargic ALL day and will not eat and just wants to be held and rocked so James and I have been taking turns just holding Gage. My poor baby! Well, as I was holding him this evening Madison decided she wanted to go outside and ride her scooter. Not even 5 minutes later we hear the door open and she comes in the house crying...I jump out of the chair (leaving Gage laying in the chair..pictured above) and this is what I see......

She had fallen off her scooter and her whole body scraped against the concrete. As you can see how messed up her face is, she also has a scraped arm, two scraped up knees, and her big toe has all the skin scraped completely off. She was bleeding all over and crying hysterically. Madison though will not let me touch her at all so she cleaned herself up and then she allowed me to apply ointment to her scrapes. She looks like someone beat her up and her poor busted lip is all swollen. Now she does not want to go into public until she is healed. So, this was just a glimpse into the day I had and I get to look forward to adding a third one into the mix. Help me Lord. :) Tomorrow is a new day. I am being paged by my son again--looks like it is my turn to rock.

Baby Shower Thanks

Yesterday my church family and a couple of friends gave me a baby shower. We were blessed abundantly. I did not want a shower at all because for one I am not a people person and secondly I have been in moods where I just want to be alone and not always be explaining about Autumn and third this is my third child and felt I did not need a shower. Well, my persistant friend Sarah would not take no for an answer and gathered people together to give me a shower and send out invites. She said I just needed to let people bless me so that is another lesson I am having to learn since I am so independent and want to be able to handle everything myself. Well, I am so glad I had the shower. We received LOTS of money for our travel and doctor expenses as well as almost EVERYTHING I need for Autumn. What I did not get, I have enough in gift cards to finish the list off. It was also wonderful to see how many people from church that love our family and want to bless us. We have been going to Stonegate for 3 years this August and have met so many wonderful, loving, and giving people. God has blessed James and I with the best family there is, great friends, and a wonderful church family. I feel guilty when so many people are helping us out and I know that there are many others that have much greater problems than we do and do not have any of the support and blessing we have in our lives. All I can do to ease that guilt is to give some of the blessings we receive to others who are in greater need than us. Yesterday was just another testament that God does take care of his children and blesses us beyond what we can ask for. His love continues to amaze me daily.

I want to add a thank you to everyone who came to the shower yesterday and showed your love to our family. I also know not everyone that I know could be invited but I know that I want to thank you all as well for all the blessing and prayers you have given to us. I also want to thank the wonderful ladies who planned it all...Sarah, Tanya, Bess, Amie, Cassie, and Janice. You girls mean so much to me and I love you all.

Dr. appointment

Yesterday I had an appointment with Dr. Blanco. It was to do another sonogram to keep track of measurements and growth. We really did not learn of anything new. We already knew that she has the hydrocephalus but they were able to let us know the measurements had double in size since we were there last so we hope it does not continue to increase that much each time we go. They said it could get worse or just stay the same. Her head is still measuring about 2 weeks behind but we learned that her humerus bone (top part of the arm) is also measuring about a week behind. They don't know why becuase all the rest of her bones are measuring on time but will keep track of it each time we go in. She is weighing 2 and a half pounds. I will go back in 4 weeks to get measurements again. I did find out that my doctor in Dallas will be Dr. Gunby but that is all I know of him at this time. I am just trusting that God is leading me to the right doctors and putting my faith in His hands and letting go of control. I guess I will meet him at 36 weeks which will be the 3rd week in September. Doctor visits will be slowing down now until September so I am just going to try to enjoy the rest of the summer and start preparing for the trip. :)

MRI pictures

Here are some pictures taken from the MRI. I will try to explain them and hope you can see what I am describing.

In this picture you can see her full body and you can see where the defect is if you look closely. If you follow her back from the head down you will notice the outside is dark. At the very end there is a light spot where the dark stops and that is where the spine stopped forming. You can also see her BIG eye in this picture as well as the light spot in her brain and the light spot that is her bladder.

This is another full view of Autumn. At the top of the picture you can see her feet. Her right foot is the one that is clubbed. The left one they say looks normal so far. She is also sucking her thumb in the picture. Her head is already facing down in this picture but she likes to move around alot.

This picture may be hard to see if you don't know what to look for and since it is so small. Autumn is at the top of the picture. It is a view of her bottom like she is sitting on the camera. You can see her 2 legs and then there is a lighter gray circle which is her private parts. :) One the right of the light circle you can see the opening of the spine which is the defect.

This picture is a top view of Autumn's brain. The white or lighter gray part is the ventricles that are enlarged. You can also see her little hands in front of her face.

Dallas appointments

Well, I kind of feel like our trip to Dallas was a waste. We did find out some info but not as much as I wished. We started this morning by taking a tour of the NICU and the Neurology floor at Children's Medical Center. We were happy to find out that both Madison and Gage would be able to see Autumn in the hospital. Each baby has their own room unless they have too many and then there will be 2 to a room. Parents can visit all hours and family and friends can visit from 9am-9pm. There are showers for families as well. I will get free meals if I am breastfeeding or pumping. One parent may stay in the room overnight but the other will have to sleep in the waiting room if they choose to stay. Once she is moved to the neurology floor then both James and I can stay the night in the room with her. They have play areas for the kids and activities to entertain the siblings while they are visiting the hospital. They will even talk to the siblings and prepare them for what they will see and let them get familiar with all the tubes and what can be touched. They even have scrapbooking on Tuesdays for the moms to get together to bond.



After the tour went we for our appointment with the neurosurgeon. He really could not give us much information since we have to wait until Autumn is born to REALLY know what will be damaged. He did say that she would probably be transferred from Baylor to Children's the day she is born and the surgery on her spine will probably be performed the next morning. So, I will probably get to see Autumn right when she is born then have to wait a few days before getting to see her again. He said he normally does not shunt in the same surgery. Depending on the severity will decide when they want to shunt her. He said if she heals normally and there is no other complications than we already know about he thinks she will probably be in the hospital 2 weeks, if that long. We will then be referred to Scottish Rite Hospital for them to care for her club foot and any urological problems she may have. We are not sure when that will take place. We will also have to have follow-up appointments often with the doctor's at Chidlren's.



Next we went to an appointment with the OB. This is where I feel the trip was a waste. After having ANOTHER sonogram the doctor told me he does not actually do the deliveries. He is like Dr. Blanco and just does sonograms. I was so shocked and confused. I was wondering what the point was for me to even be seeing him because he did the same thing that I am getting done with Dr. Blanco. He said there are several OB's there and that one would be my OB when I deliver. So, the plan is to just go back when I am 36 weeks and meet the OB that will be giving me my C-section. I really could not even think to respond to what he was telling me. I thought the whole point was to meet the doctor who would be delivering me and get details of what to expect. I am now kicking myself that I did not ask to see if I could go ahead and meet an OB while I was there. I just feel so uncomfortable meeting a doctor who is going to be doing surgery just like 2 weeks before I deliver. I guess I will call them back and try to find out if I can meet with or talk to another OB to give me a peace of mind and not have to wait until 36 weeks to kind of get an idea of what to expect. I thought I would be able to find out if the doctor plans to have a C-Section early and give me an estimate of when so I can make plans on what to do with the kids, animals, and travel arrangements. I wanted to talk to the doctor about getting my tubes tied and how long to plan to be in the hospital recovering. I thought they were also suppose to get me a tour of Baylor but they did not set that up either. I just feel like I will return home with more questions not answered.

I told James today that I did not want to go through this anymore. I am already sick of doctors and we are just beginning. We even discussed maybe moving to be closer to all the doctors we will need for the next several years. I feel like this has now become our life---doctor visits non-stop. I am feeling the stress and becoming pretty overwhelmed with it all right now. I am just ready to get this over with and back home into a normal routine. The good news is that we will not have any more travel expenses from now until September since this one week alone costs us over $800.00 for gas, flights, food, and doctor visits. There is no way we could of done it without all the help from our family. We thank and love you all so much. My strength is running low and my emotions are kicking in so please pray for me to remember God will provide and that everything will work out even if I can not get it all planned ahead of time. As time gets closer I think more about Autumn and what she will be going through and it breaks my heart to know I will have to see her go through all the painful surgeries and recovery. Pray it will not be so bad once she gets here and that we will all be able to cope without getting overly stressed and overwhelmed with having our newborn in the hospital and at the same time trying to take care of Madison and Gage and being there for them and how their lives will be changing as well. I hope the days will fly by.

Missing my boys

It has been 4 days since I have seen Gage and James and I am missing them so much. Tomorrow we will finally meet back in Dallas for the rest of our appointments and I will get to see them again. It has been really sad since Gage will not hardly talk to me while he has been gone since he is having so much fun at his Nanny and PaPa's house. He did call me last night to say goodnight and that he loves me and when I got off the phone I cried myself to sleep. It makes me realize how hard it is going to be in Dallas when they are not there with me. I pray Autumn recovers quickly so that we can all be home as a family as soon as possible. I just can't wait to hug them again!!! It has been really quiet and boring without them here. The house stays clean so Madison and I have just been laying around watching TV. We did both get lots of scrapbooking done yesterday so that was nice. We are ready though for chaos and mess to enter into our home again so we will have something to do.

We also got the results back from Gage's blood work he got done for his 4 year check-up. His growth hormone levels are really low. They should be about a 40 and they are less than 25. So, after everything is settled down with Autumn then we will re-evaluate if we want to start growth hormone shots on Gage. He is healthy though so that is not a top concern right now. The sooner we start it will allow him to catch up with his peers but I am really not worried about him until he gets a little older.

I will be posting on Wednesday or Thursday about everything we find out at the other 3 doctor visits we have.

The Lord Is Faithful

God has been showing us His amazing blessings this week. We had such short notice about our appointments in Dallas and we were not prepared financially for the travel costs. I had a little saved up but not enough and God has blessed us abundantly. Family members gave so that we may have gas and flight money. Strangers who do not even know us donated money at my in-laws snow cone stand to provide travel money. To top it all off, my PawPaw called my dad today to let him know that he wants to help us out with travel expenses as well. This has lifted a huge burden off of us. We know travel expenses are going to be really costly when I have to be in Dallas for good. We decided it is worth the extra expense for James to fly instead of drive back and forth from Dallas once he uses up his time off. We works 4 days and then is off 3 so instead of waisting 2 of the 3 days traveling, he will be able to fly and get to us sooner and stay later so he can be by our side. Also, with knowing we have to pay 50% of the surgery bill then we can use the money we save on doctor bills instead of travel expenses.

The past 2 Sundays at church our pastor has been preaching about Jesus feeding the five thousand. Our pastor was pointing out that at some point in our lives God leads us to God moments. These moments are times He shows us the miracles He wants to perform in our lives. I feel this whole journey has been our God moment. God has chosen to take the little money I had saved up and multiplied it for us just like He did with the fish and loaves of bread. People want to see the miracle of us going to the doctor to see that Autumn is miraculously healed. I also would like to see that as well and I know my God can do that but at this point I do not think that is His will. I think He wants to not show us just one HUGE miracle but wants us to see His power in the everday miracles He does in our lives. I think He wants me to keep depending on Him through this journey and experience Him like I have never experienced Him before. He is teaching me that when I am faithful to Him by tithing, serving, worshipping, and giving all the glory to Him that He will in return never let go of me and show me His love in so many ways. I have learned to never ask God why things happen but to ask Him how He wants to be be glorified through what is happening. God did not make me His daughter to spoil me and give me everything I want to make my life happy and comfortable. He made me His daughter so that when things interrupt my life and take me on a path I would not of chosen to walk, I use that opportunity to show others how God blesses, loves, and takes care of His children. James asked me the other day if I knew things were going to be this way would I of wanted to have another baby, I replied with a no. I am so thankful God does not ask me what I want first because then I would never choose to take the path that is designed to show me just how wonderful, mighty, awesome, and loving God is. I would never get to experience the miracles He is showing me and would never know just how much He really does care for and love me. I feel blessed to know that God chose us to take this walk with Him because He wants to show us how much deeper of a relationship we can have with Him and that we do not have to wait for our joy the day we die and go to heaven but get to experience that joy through Him each and every day while still living on this Earth. Thank you Lord for your many blessing and faithfulness.

MRI Results

I hope I have the facts correct about our MRI results and can explain them well enough for everyone to understand. If I am wrong then I will correct it all after we talk to the neurosurgeon on Wednesday.

Okay, where to start? The results pretty much told us that she will have all the defects that come along with spina bifida. To the best of my knowledge her type of spina bifida is called myelomeningocele. We found out that the part of the spinal cord that is affected is the sacral region. This is good news because it is the lowest part of the spine which is your tailbone. The bad part is that Autumn's is open so there is no covering membrane and the nerves are exposed. I think that means she will have a hole in her back when she is born but will confirm that with the neurologist. This also means that there is a huge probablity that all of the nerves will be damaged and the lowest nerves in your back are the ones that control your bowel and bladder control. This is the one thing I was really hoping would not be affected but it looks as though there is a great possibility of damage there. I think though as far as being paralyzed then it will only affect from the knees down but those last 2 things will be discussed and explained more on Wednesday.

Okay, to the next part. The MRI also showed that her right foot is clubbed but we could not tell if the left one was clubbed or not because she moved through the whole MRI. I hope to post some of those pictures next week. So, she will have to have surgery on her feet at some point but not sure when......another question for the neurosurgeon.

She also has a blockage to the back of the brain where the spine and brain connect. It is called Chiari II Malformation. This is causing build up of the spinal fluid and resulting in hydrocepalus. So, we already know that she will have to have a shunt put in when she is born and has the spine surgery.

All of the prognosis on what damage there will be from the surgeries depends on the neurosurgeon. This is where we need the best to get the best results possible. Dr. Sklar will be her neurosurgeon and we were told by the MRI doctor that the Children's neurosurgeon team is the best. They are the same team that did the separation of the siamese Egyptian twins who were in the news. Dr. Sklar is the senior of the bunch and director. We found out though right before we left town that he is not in network with our insurance. We were going to pursue looking for another surgeon who was in our network but after finding out how much of Autumn's progress is depending on the surgery has made our mind up that we will be using Dr. Sklar. The bad news is that we do not have a maximum out of pocket for our insurance with non-network providers so we will be paying 50% of the surgery bill which will be our greatest bill. God loves to teach us how to rely on him for our needs. :)

We were already bless though this week with 2 of my cousins, my parents and in-laws giving us some cash to help with travel expenses. Thank you to these special people who are getting us to Dallas and back. You will never realize how much you are appreciated by us.

We are still praying that the damages will be minimal and that maybe after her first surgeries we can try to get her into Scottish Rite Hospital for the other surgeries she will need. Dr. Sklar is a consultant there so maybe he will get us in and then the bills will be covered. Well, we did get more answers today and hopefully all of our answers will be given on Wednesday. Thanks for the continued prayers--we are feeling them.

Dallas Appointments Confirmed

I just found out this morning that we do have our appointment for the MRI in Dallas on Thursday morning at 8:00am. After the appointment I will fly back to Midland while James and Gage head to Port O'Connor. Then on Tuesday I will fly back to Dallas and meet up with James and Gage again and we have all the other appointments on the 9th. At 9:00am we will have our fetal ECHO done. At 12:00pm we will meet with Dr. Sklar which will be Autumn's neurologist and the one doing her surgery. After that appointment we will head over to Dr. McGee who will be my OB and deliver Autumn. They said we can then go to Baylor and check out the maternity ward and tour the NICU. We should also be able to tour Children's while we are there for the ECHO and neurologist appointments. It is going to be a long day that day but we will finally have the answers we need. We will return home on Thursday and hopefully our lives will be more organized and planned after that. :) Please keep us in your prayers as we travel.