Ashe Background

Ashe Background

Thursday, December 31, 2009

Recovery

The shunt surgery went smoothly and the doctors were happy to tell us that they didn't have any complications. Tomorrow she will be getting a CT scan to ensure everything was placed in the correct place. She won't be getting an MRI for a couple months which by then we should see if placing the shunt has made a positive impact. We were able to visit with her afterward and she looked really good. Besides her bald spot on her head and the band aid where the stitches are she seemed surprisingly alert and was looking around.

The doctor said that while he was in there he did look around and confirmed that she is missing some parts of her brain. We asked him what prognosis he expects and we still did not get a solid answer. He says that it is not what he would like to see but to pinpoint how it will affect her is not something he can tell us. The only way is to just watch her grow and take everything as it comes to us. They basically are just as clueless as we are.

Despite everything that we have been through this month, we just want her to come home. The only thing keeping her from coming home is her feedings. They want to make sure she can handle a bottle at every feeding. I think it is because she is still a preemie and it is just going to take her a little longer to get a handle on it.

We want to thank everyone for your warm wishes and all of your prayers. We know that God has a plan for us and can only hope for the best.

Wednesday, December 30, 2009

Big Day

The thing in her nose is a feeding tube. She gets every other feeding through it because she starts to get too tired when she has to use all of her strength to drink out of a bottle. Sometimes it takes her 10 minutes to down a bottle and then other times she has the hardest time staying awake.





On Tuesday Eric and I meet with the Neurologist, Neurosurgeon and the Pediatric NICU doctor. Eric and I were extremely nervous about meeting with these doctors but it had to be done. Especially since we have been getting different diagnosis/prognosis from all of them. It helped having them in the same room where they were able to discuss her issues and basically add their expertise. We were shown the actual MRI pictures, the fetal MRI pictures that were taken while she was in my stomach and the ultrasound pictures. Now I first have to explain that from the very beginning we have been given a 50/50 chance and the majority of our questions are answered with "We just don't know". From the images that they showed us we can see the sides of the brain and then the middle area were the fluid filled ventricles are. As I stated before, the Neurosurgeon didn't seem too keen on putting a shunt in and was able to explain his reason with the MRI images. He is basically stuck in the middle on whether to place the shunt in. First, we can tell there is too much fluid and that there is tension in the brain so a shunt is probably needed but on the other hand he doesn't think there is enough tension which leads him to conclude that this is the worst it is going to get and a shunt which is known to fail a lot will lead to unnecessary surgeries in the future. However, he has shown us that a part of her brain is missing on the MRI but appears to be on the prenatal MRI. He thinks it is due to the fluid pushing it out of the way which makes a shunt a good idea. He had asked two other neurosurgeons to weigh on it and one was all for the shunt and the other said to hold off until it looks like the fluid is increasing.

We were disappointed because we thought the doctors would of had a clear plan on what to do and which plan had the best outcome for Lexie. However, we were told that WE would be the ones to decide on whether to get the shunt with the majority of our questions being answered with "We just don't know". Eric and I have been going back and forth about this and we have weighed each option to basically find the lesser evil. You have no idea how hard it was for us to come to a decision not being sure if it is the best decision. It is agonizing seeing how this is our daughters life and the horrible feeling that we will endure if we happen to pick the wrong option. I deeply believe in my gut that we are choosing the best option for her and one that we can live with. Years down the road, I know we will always question what her life would of been like if we would of placed a shunt in her. Therefore, our little girl will be having surgery tomorrow where a shunt will placed in her teeny tiny head. We pray that we have made the best decision for her and only hope that she agrees with us. We know that Lexie will in no way be a "normal" child with a "normal" life. We are prepared for any mental/physical disabilities she may have no matter how sever they may be but are just thankful that we get to enjoy each day with her hoping for the best. Because as you can tell from her pictures she is just too cute to resist!

Sunday, December 27, 2009

Little Sister Update





I had a routine doctors appointment on Tuesday the 22nd and thought it was going to be a pretty normal day. However, after being seen by my doctor he decided that we needed to get her out because he was worried that her head size was getting to big. I would've preferred to keep her in a little longer but I trust my doctor so that night at 10:30 I was induced. I thought seeing how I went into labor a couple weeks ago, it was going to be a quick labor. Well, Lexie thought otherwise because 20 hours later, I hadn't dilated any more than when I came in. My doctor brought in the c-section paperwork and we begin the process for a c-section. We were going to go through with it until a urgent c-section came in and mine was delayed an hour. Well, Lexie must have heard the news because by the time it was my turn she was ready to make her debut. Within a couple of minutes she graced us with her presence. When I first saw her, I have to admit I was surprised by how normal she looked. Her head had the normal newborn look to it so I breathed a sigh of relief. She started to cry that wonderful newborn cry when all of their hands started touching her. I thought that the NICU team was going to take her away before I got to hold her but they actually let us hold her for quite awhile because she was breathing so well on her own. It was such a relief to get to hold her and actually see her for myself. I got so used to the ultrasound pictures that it was great to finally meet her and touch her.

Unfortunately, she had to go straight to the NICU and is set to stay there until the doctors and us decide what will be the best route to take regarding her hydrocephalus. I was able to come home on Christmas Eve but Lexie had to spend Christmas in the hospital. Leaving her at the hospital had to of been the hardest thing I have ever done as a mother. It felt horrible that she couldn't come with us but I just had to remind myself that she will be home soon. Two days ago was my first time holding her since she was born and then yesterday I got to feed her for the first time. When you see a baby in the incubator you think of a very sick baby, but she acts just like a newborn. She was awake and moving her head all around. She wails her arms and kicks her legs when you take too long with her bottle and then once you put it in her mouth she starts sucking away. The nurse said that if it wasn't for the hydro, Lexie would've of probably been in the NICU for a couple days but then eventually transferred out. We actually don't know when Lexie will be able to come home. She has gotten an MRI and tomorrow a Geneticist will be taking some blood to complete some labs. Once everything is back, will be meeting with the neurologist to see what action will be taken. The neurologist that we have meet with is unsure on whether the fluid is taking actual brain space or is just filling up space where no brain was present (genetic issue). I know he is leaning toward the second one and if that is his decision then he will not agree to place a shunt seeing how it will not change the outcome. Thankfully, my doctor and I don't agree with him. We have every ultrasound to show him that the fluid started out moderate and then got significant which shows the brain being a little squished to really squished. I will push to have a shunt placed and hopefully the doctor will listen. We will probably meet with him sometime next week and I will keep you updated. I know this is a lot of info and you should see what my face looks like when those fancy doctors start using those big words and all but we are trying our best to keep up!

Finally, I would like to thank all of our friends here in San Antonio. They all have been helpful from watching our other two little ones to providing us with meals. We feel so blessed that we are surrounded by such wonderful people and they will probably never know what a difference they have made during such a stressful time. You guys rock!

Thursday, December 24, 2009

Christmas Miracle







Here are some quick pics of Lexie Rae Ashe born on 23 Dec at 10:15 pm. She weighed 4 lbs 12 oz and was 18.5 in long. We're exhausted right now, so the rest of the story will follow later. She is doing great, they didn't even have to put a breathing tube in her even though she is 6 weeks early.

Monday, December 14, 2009

Sunday, December 13, 2009

Sunday, December 06, 2009

Close call!

Our newest addition seems to be very impatient and is trying to come out earlier than she is expected. With all of my pregnancies I have always had Braxton hicks so I didn't think anything of it when I got them Thursday morning. I thought they were just going to go away and started to brush them off. However, I started to realize that I was having a hard time breathing and I was having contractions every two minutes. By the time I got to the hospital, Eric was already waiting for me. Once inside and after being admitted, they started to give me medicine to stop the contractions and steroids to help her lungs in case she was going to come early. The contractions would stop and go but didn't seem to be letting up and I really thought as well as the doctor that she was going to be born. However, after getting the medication for two days the contractions finally let up and I was able to come home. Which I was extremely happy about because I missed my hubby and my kiddos. However, I have now been put on moderate bed rest and am not looking forward to it. Ethan and Gracie don't understand bed rest much less sitting rest so we are all going to have to work together to make sure that this doesn't happen again. Ethan seems to be understanding the situation but Gracie is having a harder time. As soon as I got home she wanted me to pick me her up. I felt bad telling her no but I really don't want to end up in the hospital again. Wish us luck!

Speaking of Gracie; she is now sleeping in her big girl bed. We were clearing out the office for an upcoming garage sale and decided to just put the twin bed in her room since she was gong to be moved in it soon and I already had her bedding. Well, once bed time came around she realized that we were putting her in the crib and not in the bed. We tried to tell her another time but she started to throw the biggest fit. She was screaming, throwing herself around, and throwing her leg over the side rail like she was about to jump out. Eric and I both looked at each other like 'What have we done?' Ethan was only one month older than Gracie when we moved him but a month is still a month. We decided we had no other choice and Gracie is defiantly one that you have to pick your battles with. After deciding to try it for one night, Eric went on the hunt for the bed rails. I thought she was going to get out at least 20 times before falling asleep but she fell fast asleep. The next morning I heard her over her monitor yelling, "Get out bed, Get out bed". I told Ethan to go and tell her she could get out by herself and I think she finally realized that she could come and go as she pleased. It has been about a week since she has moved and seems to be doing fine. She will get out and ask for a drink but normally she goes straight to bed. She even does well during nap times. I have to say that I am surprised, but we will see in about a month if it is still going so hot. I will have to post pictures later of her new bedroom.

Wednesday, December 02, 2009

O Christmas Tree! O Christmas Tree!


Ethan placing his ornament on the tree.

Ethan helping his sister with her ornament

Gracie admiring her ornament



Christmas Spirit shining through!

Sunday, November 29, 2009

Christmas Extravaganza

This weekend we made our way down to Sea World for the Christmas Extravaganza. We went with some friends of ours and enjoyed seeing the Christmas spirit come alive in our little ones. We watched the Polar Express in 3D. All four little ones were enthralled with the movie. Even when the chairs started shaking and it got really dark, all four wouldn't take their eyes off off the big screen. The highlight of the movie is when the snow started to fall form the ceiling. Ethan was pretty surprised that it was snowing indoors especially since earlier in the day he was complaining that it doesn't snow in Texas. Even the two little ones managed to keep their 3D glasses on the whole time. While we were there we also managed to catch the Sesame Street Christmas Show. The kids really enjoyed seeing the whole Sesame Street gang but Elmo is always a favorite. I have to admit after the shows and seeing all the decorations, we are getting excited about the upcoming holiday season.



Jeremiah and Ethan waiting for the movie to start


Gracie, Ethan, Jeremiah, and Annalise before the Sesame Street Show





Saturday, November 28, 2009

Gobble Gobble

Happy Thanksgiving everyone! We hope everyone had a wonderful Thanksgiving and enjoyed all that the holiday brings. For us it brought out my mother and brother for a quick visit. It was nice to see them and we were thankful that we had some family members visiting during the holiday. Ethan and Gracie both enjoyed the Thanksgiving feast. Gracie's favorite was the ham and Ethan's was the pumpkin pie. Gracie was eventually cut off from the ham, which she was not happy about and I found a couple finger traces in one of the pumpkin pies that looked at lot like Ethan's. As soon as I saw the pie I asked him if he did it and he said, "I made those ones Mom, but that one in the middle is not from me." He was talking about the mark I made with the knife to check if it was done. I was pretty amazed that he told me the truth about it, but what was funny was that he wasn't about to take the rap for the one that I did.

Little Turkey's

Eric being a dork



All that food made her sleepy.


The suspect with the evidence that has his fingerprints all over it.


Monday, November 16, 2009

Wednesday, November 11, 2009

Our little girl's update

These last two weeks we have been busy with doctor appointments all the while preparing for the fact that we have a new baby coming soon. I promise I have a ton of pictures of the kids to post but with things moving so fast, I am losing a little track of things. But, don’t worry because being the neurotic person I am will be back on track in no time.

Two weeks ago I had a Fetal MRI and yesterday we got the results. Despite her efforts on hiding from the technician, he was able to get the images that we needed. We always knew that Aqueductal Stenosis is the most common reason for hydrocephalus and yesterday our doctor confirmed that this seems to be the case for us. The easiest way I can explain this is that the 1st and 2nd ventricles in our brain pass fluid into the 3rd ventricle and in between the 3rd ventricle and 4th ventricle there is a straw like piece that is called the Aqueduct of Sylvius. This certain item doesn’t seem to be long enough which is causing the backup of fluid. Eric and I have been researching this and actually feel relieved that this wasn’t related to a stroke. We were also told that her cerebellum is present and is functioning properly. So, what we know now is that she has no spinal issues, no bleeding in her brain that could be due to pressure and everything in her brain looks present but just compressed a little. Therefore, yesterday was a pretty good day in our house but we have 12 more weeks to go…fingers crossed! Below is the ventricle measurement (fluid in mm) from when we found out to yesterday’s result. Just remember that anything after 10 is considered not normal/hydrocheplaus.

20 weeks- 14

23 weeks -24

26 weeks -24

28 weeks-24

I promise to keep you guys updated with any news that may come our way. I will be going in every two weeks for routine ultrasounds so we just continue to pray that the measurements either stay consistent or go down. Yet, if it goes up, it will not be the end of the world.


Sunday, November 01, 2009

Happy Halloween

This year our little ones seemed to have been influenced by our Disney trip because they each were a Disney character. Well actually, Ethan had his costume picked out for two months and Gracie just wears what we put on her. However, Ethan looked liked a real superhero in his costume; the fake muscles really helped out a lot. Gracie looked really adorable in her costume too. I knew the ears weren't going to last but she still looked cute. They both had a lot of fun and got way too much candy. Of course, Gracie kept getting into hers while we were walking. The both walked the entire time and only really wanted to ride in the wagon on the way home so they could go through their stash. Now that Ethan is older he already knows the routine and what to say so I was just busy teaching Gracie the formalities of Halloween. When I would tell her to say trick-o-treat she would say "chucky cheese". To any other person beside her parents it sounds like trick-o-treat so she still got some candy. When they would ask her if she wanted candy she would say "YUP!" and then say "Ank you" when they gave it her. Part of me thinks she got more due to the cuteness of her vocabulary.

They are getting excited!!

Striking a pose

Mr. Incredible

Minnie Mouse





Were are ready to GO!!!



Eating some candy


I will just help myself, Thank you.



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