Thursday, December 31, 2009
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
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
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
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.
Sunday, December 06, 2009
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
Sunday, November 29, 2009
Saturday, November 28, 2009
Wednesday, November 11, 2009
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
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.