Bryleigh Marie

8 Months Later

2011-06-22T10:38:00.000-07:00

Well it has been 8 months since I have posted an update. I am going to attempt a short re cap of those 8 months.
Bryleigh has continued to amaze us. She has a very big vocabulary and an even bigger personality. She is quite the sassy little girl. She loves to make people laugh. She will tell us to "watch this" and will do something to make us laugh. It is so very cute. The other day she stayed with my mom for a few hours. My mom laid her in the bed to take a nap and told her to go to sleep. Bryleigh sits up, crosses her arms, looks at my mom and says "I don't have to". Now I know this is not the best of manners, and I do not condone this type of behavior but it is really funny. Of course when she does things like this I do not laugh in front of her and I turn my head if I cannot stop a smile but telling the story later is pretty funny. Sometimes when something happens she will put her hands up and say "seriously?" Of course it sounds more like "sessly". She is always singing her ABCs. She has gotten it down great now. She is also counting to 12. Okay so I could go on and on with stories and new developments. But I will stop so that this does not get too long. :-)

Bryleigh was diagnosed with dysphagia last year so we put her in feeding therapy. A few months ago she had another swallow study done and they said she only had small trace aspiration. She was not coughing when she would drink so I think the therapy did help her. This month we were able to stop her feeding therapy and will be doing speech language therapy. The developmental doctor recommended this. This month we went for a follow up with them and they said her receptive language was about 6 months behind and her other language skills about 4-5. I was a little shocked at that because she has such a big vocabulary and I am always being told by people that she talks really well. I am still pleased with how well she is already doing and am not going to stress about it because I know this does not define her and I am with her and she still continues to defy what her doctors say.

She was put on trileptal for her seizures awhile back. She does not have them often but they are still always a concern. Her last two seizures were focal seizures as where most of the others were absence seizures. I am not sure what brought on the change but everything about them was different. No vomiting, no staring, and longer. I have been keeping a log of every time she has a seizure. I try to put what we were doing before, what she ate, what she drank, etc. and I have not been able to connect the dots. The last three seizures were after she had been playing and was a little hot, sweaty and tired. I'm not sure if this is a connection but I am very conscious of how much she exerts herself now.

On May 17, 2011 Bryleigh had surgery (Cranioplasty) to repair the bone where her occipital encephalocele was. She had surgery when she was 7 days old to repair the skin but she has always had a soft spot in the back of her head. This really scared me because there was no bone protecting her skull back there. A craniofacial surgeon and her neurosurgeon performed the surgery together. They did a bone graft using bone from her skull to cover the hole. Her recovery was amazing. Her doctor was even shocked by how little this affected her. She was out of the hospital in 3 days. She was only there the 3rd day due to a stomach bug she got in the hospital. The surgery took 2 hours. She was back in the OR for 4 hours because it took the anesthesiologist 2 hours trying run the arterial catheter. Another anesthesiologist finally went in and was able to get it in her thigh. This caused Bryleigh more pain than the surgery itself I think. She had this in her leg for the first day. She would not move her leg, cried, and vomited a few times. As soon as the nurse took it out and got her bandaged up Bryleigh looked at her and said "thank you". She was sitting up and very talkative after this.

If I can think of any other updates I will be sure to post them. I have so many pictures from the last 8 months I had a hard time deciding which ones to put. I hope this post was not too long :-) Hopefully I will be back soon.

Posing for the camera

Her cute little smile

Her bubba is trying to teach her how to play baseball (notice the bat upside down, he said it was easier for her to hold

After eating Spaghetti

Going for a walk with her Choob Choob

On the way to the hospital for her surgery. This face explains how she feels about it

Morning after surgery.

Eating dinner the day after surgery

Eating breakfast the morning we got to leave the hospital

3 Month Update

2010-10-06T12:09:00.001-07:00

Well no improvement on me updating more often. I seem to only update about every 2-3 months, so getting everything in one post is kind of difficult. Anyways, Bryleigh is still doing well and accomplishing new things every day. She is walking very well now and even trying to run. She has not got the running down to well because she normally ends up falling down, but she gets so excited and her eyes get so big when she “takes off”, it’s so cute. Yesterday Tyler was acting like karate kid and kicking his leg out saying haa-yaa (however it’s spelled) and Bryleigh started imitating and making the haa-yaa noise. She has been really good at imitating things lately. It is so fun watching her learn new things. Her vocabulary consists of a lot of words now days. Her favorite word is still “momma”. Every morning before she even sits up in her bed she is calling for “momma”. It’s the sweetest thing. Bryleigh had always slept in our room but when we moved in August she finally got her own room. I had a hard time at first but we have adjusted. Well I have adjusted, Bryleigh did not seem to be bothered by the change at all. I did have to get a video monitor so I could see her at all times.
She is a very bossy little girl and will scream at someone who does something she does not like. We have started to discipline her but she does not seem to be responding very well. I am sure consistency will pay off eventually.
In July Bryleigh was diagnosed with dysphagia. It is not a very bad case but it is still something that needs to be managed. We are putting a packet of Simply Thick in her cups. We have kind of skipped the whole sippy- cup thing and went straight to straws. She does not get choked up near as much when using a straw. One of the therapists recommend Vital-Stim Therapy. ECI does not provide this service so I had to find a home healthcare company who did. We had an evaluation with them and they tried the therapy on her and she did not like it at all. They got through about a minute of it and ended up stopping. Her developmental doctor did not end up signing off on it and her neurologist was not very supportive of it either. Bryleigh’s brain did not form correctly in all areas. The area that affects her swallowing is one of them. They said the Vital-Stim would not be beneficial to her because it would not “fix” the damaged area of her brain. So for right now I am going to hold off on pursuing it, but may look more into when she is older and will tolerate. It is said to not be painful, and every doctor has their theory on things and some of them seem to think it could help her. I have heard quite a few success stories with it too. For now we are just doing speech/feeding therapy.
In August she had 4 absence seizures. They lasted for about 3-5 minutes each. She did not have any difficulty breathing during them so we did not have to take her to the hospital. Her neurologist had us up her dosage of Trileptal. We met with him in September and he told us that the children with polymicrogyria are sometimes the hardest patients to get their seizures under under-control. For now I do not worry too much because she does not have them very often. I pray that it stays this way.
Bryleigh’s developmental doctor suggested that we take her for a hearing test just to rule any hearing problems out. We took her to a place where they tried the standard hearing test and she did not cooperate very well. She would not look at the direction of the noises and we were not sure if she was just busy playing and did not want to, or if she really didn’t hear it. They also put these things (sorry I don’t know much about this) in here ear to measure how her ear drum responded and they said her left ear did not respond well. Again, they said that it could be that she was moving so much it could not be accurately tested. Since the test was inconclusive, we are going to have an ABR test done.
Not updating for 3 months causes my posts to be very long so I apologize for the novel  I am updating from work so I do not have many current pictures. The only ones I have are from my phone and they are not the greatest quality. With my rate of updating I will not be heard from until Christmas time! Wow this year has flown by! I will try for sooner. Maybe Thanksgiving!

Her sweet little smile

Running at the doctor's office

Walking to the house

Color time with Bubba

Back with a Bryleigh Update

2010-07-21T07:13:00.000-07:00

Okay well I am well over due for an update. I still read a lot of the blogs I follow but am horrible with updating my own. Bryleigh is 18 months old now. She is getting so big. She really has a fun personality. She is very sweet and loves to talk and give kisses. She has about 15 words (not counting family members) that she uses. We recently had a developmental appointment and they have her at 17 months for her language skills. Everything else is at about 14 months. I wouldn’t say she is a “walker” but she does take a lot of steps sometimes. She is really wobbly but in time she will have it down. Her therapist told me that the longer she crawls, the more muscle she will build up. She is about 26lbs right now. Her doctor said that she is in the 25th percentile for her height and 95th for her weight! The percentiles are suppose to be a little bit closer. For now we are just going to wait and see what her endocrinologist thinks. In time we may need to meet with a nutrionist to see what we can do. She said that since she has low muscle tone that her body does not burn the calories that a person with normal muscle tone would.
Bryleigh had her first seizure back in February. It was not a very bad one but still very hard to watch. The hospital said they thought it was a febrile seizure but her neurologist was not leaning towards that. He has always said he thinks she will have some sort of a seizure disorder. We opted to wait on daily medication but had some diastat just in case she had another. Well in April she had another seizure and that lasted about 15 minutes. The morning she had it I heard her spitting up in her bed. I picked her up and she could not sit up straight. I immediately thought she had something wrong with her shunt. I started to get ready to take her in to the hospital and she started seizing. About 5 minutes in to the seizure I gave her the diastat. I waited another 5 minutes and it did not stop so I called 911. They got there about 5 minutes later. We decided to put her anti seizure meds. He put her on Kepra. I noticed a change in her personality. She was very moody and would hit everyone. We talked with her doctor and he said that what we were explaining is a side effect of Kepra. We switched her to another medicine. I cannot remember the name at the moment.
Bryleigh had surgery in May to strengthen the muscle in her eyes. Her left eye would drift out sometimes (called exotropia). The ophthalmologist decided to do both eyes the day of the surgery. He noticed her right eye turning sometimes too. She did really well and healed very fast. Her eyes no longer drift out. She had a surgery scheduled in July to repair the bone where her encephalocele was. We decided to hold off on this surgery until she is about 2.5 or 3. They were going to remove bone from another place on her head and cover the hole in the back and go back later and remove bone from another place, split it in half and use one to cover the place where the removed it for the first surgery and put the other half where they just removed it. Her bones are not thick enough to split right now so she would have to do two surgeries. When she is 2.5 or 3 her bone will be thick enough to split and they can fix it with one surgery. So for now I have to be the nervous mommy and freak every time she bumps the back of her head.
She still has quite a few doctors but the frequency of the visits has gotten better. Although in the next month and a half she will have an appointment with her endocrinologist, a hearing test done, her 18 month check up, and a swallow study done. She chokes a lot on juice and water. She is not very good at using a sippy cup either. Her developmental doctor thought it would be a good idea to get the swallow study done to see if she is having a hard time with swallowing certain things. We may need to thicken her juice and water up.
I could write a lot more about Bryleigh but since I haven’t posted anything in about 6months I tried to cram as much as I could in this post. I will try and be better!

Silly girl. She got in the potty (yes it was clean). I am going to have to put something on them to keep her out.

Before her eye surgery

After her surgery. Her eyes looked crossed for about a week and blood red for about two weeks.

She loves talking on the phone!

Finally Im updating!!

2010-03-30T16:00:00.000-07:00

Well as most of you have realized I am terrible at updating my blog. Just terrible. I always say I will get better but I don't think I will anytime soon. lol. I have wanted to post pictures but I lost my camera last month and need to get one really soon. Its driving me nuts. Bryleigh does such cute things and I want to capture them all but now I only have my phone which does not take great pictures.

Bryleigh has been doing good. She is starting to cruise. She is not quite brave enough to let go of what she is holding onto to keep herself to a stand but she is holding it one handed now. We are really in no hurry for her to walk. Her therapist told me that since she has low muscle tone, the longer she crawles the more muscle she will build up in her upper body. So for now I am completely content with where she is at. She is starting to say more words and can identify certain objects by name now. She loves her baby dolls. She hugs them and rolls around on the floor giving them kisses. Its so cute. She also likes to play with her brothers cars. And of course like any child, everything she is not suppose to touch. :-)

She went through a stage where she ate absolutly everything I would give her. And she never seemed to get full. I started to get worried she didn't have taste buds and that her body was not letting her know she is full to stop eating. But she recently stopped doing that.

She has gotten a bit of a mean streak in her at the moment. She likes to lean in to kiss you and then slaps you and laughs so hard. I cant help but laugh too but I need to stop that. lol. She also likes to head-but people which is kind of strange. She always has a bruise in the middle of her forehead. We are working on stopping that too. Also, if I am laying down in bed she will crawl over and grab a handful of my hair and yank on it. But i think it may be an age thing. (Hopefully, lol)

Bryleigh had a seizure on February 27th. We had gone out to eat for my birthday and she was fine when we got there. Then all the sudden she starting vomiting and then went limp, was not responsive, and got really hot. I took off out the door with her to get her to a hospital and she started seizing. It was only on the left side of her body. The hospital we were at called her neuro-surgeon and the neuro said to do a shunt series and if all looked good send us home. Everything looked good so we went home with the diagnosis of a febrile seizure. The next morning she was still not herself and i was still worried as to why she had the seizure so i decided to take her into the hospital we normally go to. They did the same tests over again called the neuro and sent us home. Then Sunday they called us back to the hospital and said that her blood work came back abnormal and they needed to re draw it. So back to the hospital we went. Her blood work came back fine and we were sent home with the same diagnosis. I was not happy with the diagnosis because when she had her seizure her fever was only 100.4 (she was teething). That is not very high. I made an appointment with her neurologist and he said he thought it could at the least been a complex seizure because it was focale (only on one side of her body) but thinks that she may be developing a seizure disorder (hopefully not). I opted to not put her on daily medications right now because we are still not sure what kind of seizure it was. He gave me a medication to give her to stop a seizure if she has another. If she does, I will probably start her on medication. He also ordered an EEG be done. We had that done last Wednesday. Still have not gotten the results. She no longer likes any doctor, as soon as they get near her she screams. Its so sad.

She will be having her encephalocele bone repair on July 6th. I am not looking forward to this AT ALL. But it needs to be done. She still has a big soft spot in the back of her head. With her being as active as she is it makes me nervous. There is no bone there to protect her brain. The area of the brain not covered by bone is the occipital area and that is where the vision takes place. Her left eye is still not as strong as her right eye so we continue to patch her right eye an hour of the day. Her skin is so sensitive it leaves a red circle around her eye for a little while after its removed.

Her developmental doctor and I have noticed that she turns her left foot out alot more than she should. She said Bryleigh may grow out of it but if not we will try using a brace to help her keep it straight. They recommended putting shoes on her more often. This is hard because she takes them off every time. But..I went to the store the other day and found a pair she cant get off :-). So we will see if this helps.

Overall her progress is great and we are so thankful. All the prayers and support Bryleigh and our family received we will forever be greateful for.

I better finish up, Bryleigh is screaming at me now for my attention. She doesn't have a low pitched scream its like a very loud shrilling scream. lol.

I posted two pictures from her birthday party even though it was almost 3 months ago, I just haven't updated in so long :-)

Bryleigh's birthday cakes!

She was not so thrilled about the birthday hat.

Bryleigh's first big snow!

She loves to hang her head backwards. This was before her EEG

After they FINALLY got the electrodes on for the EEG

Pretty head wrap to keep her from pulling them off.

After the EEG. She was not happy with the messy hair she had to leave with :-)

I wish I had some better pictures to post but these are from my phone. I need to get a camera ASAP!

Happy Birthday Bryleigh

2010-01-05T08:18:00.000-08:00

Happy Birthday to my sweet little Bryleigh. What a blessing you have been to our family.One year ago today I got to see your sweet little face for the first time. I can not explain all the feelings I was feeling at that moment. God gave me the strength to handle every situation with grace. You have far exceeded the expectations that some doctors had labeled you with. I am truly grateful for that and feel so blessed. Every milestone you reach absolutly amazes me. I have learned to never take small things for granted because those are the things that sometimes matter the most. Thank you God for our little angel. She has truly made our lives wonderful!

Happy New Years

2009-12-29T18:10:00.000-08:00

I hope everyone had a great Christmas. Bryleigh celebrated her first Christmas and it was a white Christmas here in Dallas. Bryleigh got lots of presents but she was more interested in eating wrapping paper. She puts everything in her mouth. Her babysitter calls her a little billy goat. On Christmas she learned how to pull her self to a stand using the couch. She now does this on everything. She has had her share of wipe outs and hit her head a few times. She does not seem to be phased by them because she continues to pull up on everything.
She has been crawling really well lately. She is really fast. She takes off to the bathroom every chance she gets. She also shakes her head no back to us. It is so cute. She waves bye bye and tries to say it, but it souds more like di di. I am just so happy with how well she is doing. She is an absolute joy to watch as she learns all these new things.
We may be making another trip back to Duke for another cord blood infusion I had a date set but had to cancel due to our schedules. But hopefully I can get something set up soon. My best friend Stephanie lives in South Carolina and is going to drive down to stay with us. She went to my wedding and that is the last time I have seen her. So I am looking forward to the trip.
Bryleigh will be 1 next Tuesday. I can not believe it has been a whole year! Time goes by so fast. I am so blessed to have her in my life. I look forward to the years to come to be able to watch her grow and learn new things.
I don't get a chance to post much but I get on everyday and read everyones blogs. I say every time I am going to be better about updating. Maybe this time if I don't say it I will actually do better :-) Hope everyone has a Happy New Years!!!

She looks so excited about the present. I took these pictures in this order and her face is just so cute!

Mommy and Bryleigh!

I couldn't get her to sit still long enough to get a picture :-)

Checking out one of her new toys

She loves to stand up now

Family!

Holidays are Nearing!

2009-11-06T07:52:00.000-08:00

Time goes by so fast. I can not believe Bryleigh will be 1 in 2 months. My son Tyler turns 5 in 2 weeks. So this time around our house is very busy! We have birthdays to plan, and holidays to prepare for. But with all the plans I absolutely love this time of year. I cannot wait to decorate for Christmas, I think that is when my house is the prettiest :-)
Bryleigh is continuing to do great. She is crawling around the house, getting into sitting position on her own, and talking alot. She is very fascinated with the dog food and laptop. She will be playing in the floor with her toys and as soon as someone sits down with the lap top she is right there trying to get some play time in on the keyboards. lol. She goes after dog food everytime she sees it, and I could not figure out the fascination. So i let her make her way to it the other day and she did not eat it, just wanted to feel it and throw them around. She definitely lets us know if she does not like something. She will give us her pouty lip or throw herself backwards.
About two weeks ago Michael was dropping Bryleigh off at the sitter and he pulled her arms to get her out of her car seat (something I said NOT to do ALL the time)and her elbow pulled out of place. She was in so much pain and it was so sad. I left work and met them at the hospital. They moved her arm around and did something that put it back. That day she was very fussy and would not use that arm at all. I started to worry because the doctors said she should be back to using it normally within a few hours. But by the next morning she was using it and pushing herself up with it. That was such a bad experience. So needless to say daddy does not pick her up that way anymore.
Bryleigh had an ophthalmology appointment about 3 weeks ago and they said her left eye does not focus as good as her right eye. We have started patching her eye for an hour a day each day. She does not like when i put it on her so she shakes her head side to side so I cannot get it on. Once I succeed she is fine with it. We have to do this for 4 months.
Next week she has an endocrinology appointment. I am not sure what exactly they are going to do, her doctors have just suggested she go to one. The following week she has an appointment at Scottish Rite. Her developmental doctor referred her to be seen. I have heard so many great things about the hospital.
Bryleigh is still in ECI and I think it is helping her so much. Her therapist sees another little boy at Bryleighs sitter too. Every time she comes to work with him she will do some stuff with Bryleigh even if she doesn't have an appointment.
Below are some recent pictures of Bryleigh from my phone. Sorry the quality may not be great, I have a ton on my camera that are probably more clear but I am at work so I can not get to them.

Tyler & Bryleigh at the Arboretum in Dallas

Bryleigh's Halloween pj's she wore to her sitters!

My little bumble bee!

Just one of the big smiles Bryleigh likes to give!!

Monday Update!!

2009-09-28T15:58:00.001-07:00

Hello Everyone! Its been awhile since i have posted an update. Bryleigh is still doing great! Since I posted last we have met with her developmental doctor and she has had an MRI (today actually).
Well I will start with the developmental doctor. When we went Bryleigh was right at 8 months. They have her gross motor skills adjusted to about 6 months and her cognitive is at about 7 months. Her receptive and expressive language is at 8 months. The last time we went saw this doctor Bryleigh was 4 months. The doctor was only able to evaluate her gross motor skills and language. She was not able to get a good idea of her cognitive because at that time Bryleigh did not track objects or look at anything. This doctor like all her others was very concerned with her vision. When we were in her office this last time she ws very surprised that Bryleigh could see. She said she thought that Bryleigh was blind. She said she has only seen a handful of kids make such a drastic change in their visual capabilities. Overall we were very pleased with the appointment. We go back in January to see them.
Bryleigh had an MRI and an appointment with her neuro surgeon today. She did great for the MRI. She was sedated which always makes me nervous but she did awesome. We met with the neuro surgeon afterwards to go over the results. The arachnoid cyst that they have seen on her previous scans had not changed in size. So no surgery for Bryleigh. I was so worried about this. They did notice that she did have some extra folds in her brain in the occipital area. This is due to the encephalocele. She said this could cause vision problems and/or seizures. Bryleigh has not had an seizures so this has not seemed to have any effect. I still have some researching to do. I will take the radiologist report and dissect every word so that i know exactly what everything means. lol I am not sure why i do this, but oh well, i just like to know everyhitng i possible can. :-)
Bryleigh has started saying mama. At least i like to think she is doing it intentionally. She does say dada on a regular basis. She has also started trying to crawl. She get on her hands and knees and rocks back and forth. She also can sit on her own for a few minutes. When she gets tired she just falls over. She has not figured out how to get into a sitting position on her own, but we are working on it. She is always smiling and always laughs at her siblings. She smiles for everyone, but her brothers and sister are the only ones she really cracks up for. Tyler loves making her laugh for people. She has 4 teeth completely in and another about to come in. She grids them together sometimes and its the worst noise ever. But she likes it. haha.
We are so happy with the progress she is making. She is such a joy. I get SO excited when she does new things, well actually even if she has done it before I still get excited, lol.

A Year Ago Today

2009-08-21T10:44:00.001-07:00

One year ago today I was 17w3d pregnant. It was a big day for us. We were going to find out if we were going to have a little girl or boy! I knew it was gonna be a girl :-). We also found out the news that the little baby i was carrying was not "normal".
I remember getting up that day going into work being so super excited. I even dressed nicer for that day:-) I went to work for a few hours barely getting anything done because I was watching the clock waiting for my appointment. My mom and sisters were going to meet Michael and I at El Fenix after the appointment so we could tell them what we having.
Michael picked me up at work and we drove on over to the doctors office. The doctor started the sonogram and immediately told us he sees some things that he does not like. He proceeded to tell us that our baby had spina bifida, a lemon shape head, and enlarged ventricles. "It does not look good" is what he said. I looked at Michael and he just had a blank expression on his face, then i started crying. I did not know anything about any of the things he just said. He said it could be genetic, etc. So he said he could do an amnio that day. After he explained a little about what the baby had i remembered to ask what we were having. lol. I completely forgot about my reason for being there:-). He said he was going to call my OB doctor and have us go talk to her.
We went over to talk to my OB and she had absolutely nothing good to say. She just kept telling us how bad it was going to be, that the baby was in really bad shape, had alot of issues, we should consider terminating, etc. But we immediately knew that we were going to keep the baby and give her the shot at life she deserves. I asked my doctor to send me to another sono doctor for a second opinion and she said there was no need, that he was the best. She then sent us over to the NICU to talk to one of the doctors so he could explain more to us. He was alot more assuring about everything.
The next morning I woke up and just cried. I was so upset. I had already done a ton of research on spina bifida, etc. We called and made our own appointment with a specialist and were set to be in the following week. Within a few days I was feeling much better about it all. We finally went and met with the sono doctor and he said she did not have spina bifida but did have a lemon shape head, enlarged ventricles, and an encephalocele. I was so excited about her not having the spina bifida that I did not ask much about the rest. When I got home i researched some more. I scared my self to death looking up encephaloceles. They literally only put the worst case scenarios on the Internet. From there we just went about the pregnancy knowing my little girl was going to have some struggles in life, but we were willing to do whatever we could for our sweet little baby.
Today Bryleigh is 7mo3w old. She is absolutely perfect to us. She is doing so much better than i had prepared myself for. God gave me this little girl and gave me the strength to care for her and give her what she needs. I would not change our experience for the world. I thank God everyday that I did not listen to my fisrt OB doctor (I switched). I could not imagine our lives right now without Bryleigh. In a way I feel privileged that God chose me to care for a child with "special needs". Its hard to explain what I mean by that but I am sure some of the other mommies may know what I mean. Bryleigh is so special to our family! Every little things she does absolutely amazes me. Her being able to do things that others said she would never do makes it that much more special. God has been so great to us!

Yep, Im just paranoid :-)

2009-08-18T19:31:00.000-07:00

So yes I was more than likely just being paranoid. We are just going to take the "conservative" approach for now and try to monitor the spells more closely. So again, we will not have to go back to him unless a need arises in the future. He is such a great doctor though. But there is no need to have so many if we don't need to. The first week in September we go see the developmental doctor. Hopefully that are as pleased with her as we are :-) She is such an easy going baby. Everywhere i take her people comment on how good and happy she is. She can sit up on her own unassisted on the bed for a few seconds at a time. When she starts trying to look around a lot she falls over.
Bryleighs hair is curly I think. She doesn't have a bunch yet, but the stuff she has on top curls. It so cute. It also swoops up over her shunt. Its not quite long or heavy enough to lay down over it. I put bows on her occasionally and she pulls them off and puts them in her mouth.
It's night night time!

Play Time!

2009-08-17T18:10:00.000-07:00

I got some really cute pictures of Bryleigh playing in her exersaucer (spelling). She loves being in that thing. It really helps her with head control, etc. There is this lizard that light up and sings when you hit it. She has got that figured out which i thought was pretty impressive :-). She sometimes gets so intrigued with it and stares at it like her gaze is gonna make it do something. lol i dunno. The first picture is a picture of her staring at it.

Tomorrow we go see the neurologist. Hopefully he thinks that it is nothing and I am just being a paranoid mommy!

Rolly Polly

2009-08-14T19:29:00.001-07:00

Bryleigh Loves to roll around! She rolls from one end of the living room to the other!! She is also sitting up for a few seconds on her own! Her therapist called me yesterday to let me know how well she is doing. They are all very impressed with her progresses. Im so proud of her. She is such a happy little girl. She sometimes laughs so hard. Her brother made a tooting noise and she cracked up. So sometimes to get her to laugh we do that. Lol its a little weird but she likes it. :-)

On another note. She has been having weird like staring spells. After it she gets very upset and screams. It is so sad. Im not sure if it is even anything or maybe just gas? I made her an appointment with the neurologist. We actually were told we did not have to have routine check-ups with him anymore. Last time we went he said she did not have any issues that he needed to see her for. But the staring spells is something her neuro-surgeon wants her to see the neurologist for. So we go see him Tuesday.

I got a video tonight of her rolling around some! I got her towards the end so she is a little tired :-)
(not sure if it will upload though)

Hello Everyone!!!

2009-07-21T18:15:00.000-07:00

Yes we are still here. I have not posted anything on here in so long. I bet its been 2 or 3 months. I am not able to get on the site at work and by the time i get home i never get on the computer. I still get on my phone sometimes and read every ones blogs. Well, nothing has happened with Bryleigh since I last posted. She has been doing so good. I am so proud of her. She is such a happy baby, always laughing and smiling. She wants to sit up so bad, she really tries, but just does not have the control yet. She will sometimes roll over. She can push herself up while on her tummy. But she does get exhausted quickly. But hey, she is still accomplishing things. She has pretty good head control. Her therapist have said that in the past couple weeks that she has really started doing awesome. We saw her neurologist about two weeks ago. He has her adjusted a month behind her actual age. That is good because the developmental doctor had her 1.5 months behind just a few months ago, so she is steadily catching up. We no longer have any reason to go see the neurologist. He is a great doctor, but i am glad we have one less doctor to o see :-). He was very pleased with her eye sight. Last time we were in he said she had major vision problems, this time he said she is doing great at tracking and recognizing people and things. She weights 1 7lbs now. She is a little chunky monkey. I cant believe she is almost 7 months, Time goes by so quickly.

I recently got married on the beach. It was so pretty. Bryleigh spit up on her sister during the ceremony. :-)

Here are some recent pictures!

I've been tagged!!

2009-05-07T11:39:00.000-07:00

I've been tagged!

I have been tagged by my blogging friend, Carla, Miles' mom. This is my first one!!!

24 things about myself
1. What is your current obsession? Probably working out. Haha. I am training for a 5k and the class I am in is a no walking all running class. So I run alot because I do not want my class to have to wait on me during practices. lol

2. If you could do any job in the world & be 100% successful, what would it be? I would like to be a lawyer. I have my degree in paralegal studies, but do not even do that as my career. But I think being a lawyer would be cool.

3. What are you wearing today? Texas Longhorns t-shirt that says "Tyler's Mommy" on the back (its his t-ball team name) and brown velour pants. I didn't work today.:-)

4. Why is today special? Greys anatomy 2 hr event tonight!!

5. What would you like to learn to do? cook. I cannot cook anything at all. But it may help if i tried. Michael does all our cooking,

6. What’s for dinner tonight? Who knows. haha

7. What’s the last thing you bought? #7 at Grandys!!

8. What are you listening to right now? Tyler pretending to play baseball. He makes all the noises from the sound of hitting the ball, the crowd, the batter, and the announcer!!

9. What’s your most challenging goal? To run in a marathon in the next year or so.

10. What do you think about the person who tagged you? Carla sounds like she a such a great mommy. She really likes animals (as do I). She has adorable children! We actually don't live to far from each other.

11. If you could have your house totally paid for, fully furnished anywhere, where would it be? Hmm that's a good one. I would say like Rockwall Tx. Still close to family.

12. What is your favorite vacation spot? Panama City Beach Florida. Have not been in years.

13. What would you like to have in your hands right now? What i have right now. My little Princess.

14. What would you like to get rid of? The rest of my baby weight, haha

15. If you could go anywhere in the world for the next hour, where would you go? To see my best friend Stephanie who lives in SC

16. What super power would you like to possess? Physical healing, for obvious reasons. I'll third that!

17. What’s your favorite piece of clothing? This pair of jeans I have. I cant remember where I got them though.

18. What is your dream job? #2

19. If you had $150—what would you spend it on? I would go to babies r us. I love that store. I would buy Bryleigh some light up toys. She loves lights!

20. What do you find annoying? Ignorance

21. Describe your personal style. I am a bit boring. My little sister goes shopping with me on occasion to help me pick out clothes. She is the trendy one!!

22. What is one of your secret skills? I can tell by looking at someones hair if they have hair spray in it, gel, bio silk type stuff, etc. Lol i know its really weird, but I am a hair person. haha

23. What are you most proud of? My kids. They mean the world to me. They have made me the person I am! I am also proud of my soon to be hubby! He is such a great person! Great dad and step dad. I couldn't ask for better!!

24. What is your typical morning routine? Alarm goes off at 5:45 a.m. I hit snooze until about 6:20. Feed Bryleigh, wake Tyler up, get ready, pick Tyler's breakfast, head out the door. Drop Tyler off at daycare then drop Bryleigh off at her sitters, then head to work. Work until 4:30, go get Tyler then Bryleigh, go home and clean or do whatever it is that needs to be done. Play with the kiddos, get ready for bed, sleep, repeat the day. haha

I will tag the readers whose blogs I follow who have not already done one:
1: Lisa (Elisabeth's Mommy)
3: Zoe (Lillian's Mommy)
4: Hamza (Huda and Hamza's Mommy)
4: Josephine (Avery's Mommy)
5: Shannon (Dylan & Duncan's Mommy)
6: Sara (Kadyn's Mommy)
7: Stefani (Audrey's Mommy)

Not the shunt!

2009-05-05T20:00:00.000-07:00

Good news! It is not her shunt! They did a CT and everything looked good. We don't really know why her head size is bigger. We will continue to keep a close eye on it. Thank you for the prayers!

What a Day

2009-05-05T15:24:00.000-07:00

The appointment with the developmental doctor went good. She said that Bryleigh is about 2 almost 3 months in her gross motor skills and as far as cognitive its hard t tell because Bryleigh's vision impairment. She also felt that Bryleigh does not see well. But every doctor has told me that so nothing new! She said that her expressive language is good. She would coo and Bryleigh would coo back. Also, she does very good at trying to hold her head up. So we will just keep working with her!
The doctor did her head measurement and got a measurement of 46.7. That is up 2 centimeters from Wednesday. I know technique plays a little role in measurements. I took her to her pediatrician to get measured and they got her at 45.8. Which is still up from her appointment two weeks ago. I also measured and got a higher number than I normally do. So I am going to take her to the hospital to get looked at. She has been spitting up alot, but she is not lethargic or anything, so that great. I just want to get her looked at as soon as possible. Her doctor said I could just wait for an appointment with the neuro surgeon, but I think it may be best to have her looked at just in case. I will keep yall posted!!Please keep us in your prayers!!

I also have been up since 4a.m. My older sister got in a wreck, and then my little sister got in one around 8a.m. They are both okay though!!But its been a looong day!!

Finally an Update!!!! Good News!

2009-05-04T16:40:00.001-07:00

I am finally getttng a chance to update :-). I have been so busy lately. This site is blocked on my computer at work so I cant update then, then by the time I get home I don't even get on the computer because I have so much to do!! Too busy!! Anyways...We met with the neurologist and he said that he thinks Bryleigh may have what is called a lobar holoprosncephaly. When the brain is developing it is suppose to divide into two hemishperes. With a lobar holoprosencephaly it means that the brain did not divide completely. The doctor went ahead and scheduled an MRI so we could confirm/exclude this. Well we had the MRI done last week, and she does not have it! That is great news because it is just one less thing we have to deal with. He said the MRI she had the day she was born was a little hard to read because the brain was so distorted (she had not been shunted then). Now that she has her shunt things are a little more clear. He said that her ventricles are much smaller, that she does have her corpus calossum but it is thinned. She also does not have a Chiari malformation. Pretty much what he said is that she has congenital hydrocephalus, absent septum pellucidum, and an encephalocele that had been repaired. So nothing new!!
Bryleigh has been doing great. I started spoon feeding her cereal and she has done great! We tried some carrots yesterday, and she liked them. I also switched her bottles from Avent to Dr. Brown. She spits up alot now so I thought maybe the Dr. Browns would help. They have definitely helped with her gas, but not so much with the spitting up. She weighs 14lbs now. She had her 4 month check up and she got her shots. She only cried when they held her leg, she was fine right after. That is really amazing to me because Tyler would cry so hard I would think he was gonna pass out! She has been through so much already it just doesn't faze her :-). She has been really making noises too. She loves the sound of her voice. She also will smile for us, but mostly smiles when she is staring at the ceiling or something while she is making noises. When we went to the ophthalmologist he said that there was no damage to her eyes, so i assumed that she could defiantly see. Well the neurologist said that it is great that everything looks good with her eyes, but whether or not what she is seeing registers with her brain is what we have to wait and see. She still does not track objects. Every once in awhile I think she sees me, but she mainly just likes looking at lights. So we just have to wait and see. We have an appointment with the developmental doctor tomorrow. We hav not seen her since Bryleigh was in the NICU.
Bryleigh also had an MRI of her spine the day they did her brain and everything looked good with that.
Her therapy with ECI is going good. She has three therapist that go to see her. Her legs are a little tight while her arms are loose. But we will just keep working on that!
She is just so cute! She loves sleeping in my bed, but I try to avoid that, but she just seems to sleep so well, not me though. Lol. I will let everyone know how the developmental doctor goes. Its a bit rude of me to leave everyone hanging with what my last post was about. Wont do it again!! Promise! I still read every ones blogs everyday from my phone!!I will be better!!

Smiling for Mommy!!

She sucks her thumb!

She doesnt care to much for her Bumbo!

Update that I will be Updating Soon!!

2009-04-24T19:04:00.000-07:00

Sorry everyone i still have not posted pictures or how the appointment went! I have been so busy and this site is blocked at my work so i have to do it at home. But when we get home there is always something going on, whether it be Tyler's t-ball or my running class. Right now Michaels son Jaylen and Tyler are blaring some video game. lol . I am setting time aside tomorrow to add pictures and updates!!!

Almost the Weekend!!

2009-04-15T16:55:00.000-07:00

Whew this week at work has been super busy. I also started my running class this week. I go every Tuesday and Thursday night and I am training to run 5K. I use to run back when I was in high school. I was actually pretty good, but decided to quit. Lol I look back now and wanna kick myself. But thats okay, we live and learn :-).We had to run a timed mile to get placed in our groups. I was actually able to run the whole mile. haha. I was really nervous, I didnt think I was going to be able to do it because I seriously havent worked out in well over a year. I finished in the top 5 so I was pretty proud of myself. Well enough bout me. lol. Bryleigh has been spitting up alot this week. I do not think it has anythng to do with her shunt because she does not have any other symptoms of an infection. The neurologist office called back yesterday and set up an appointment for this Friday to meet with the doctor. He has some things he wants to discuss with Michael and I. He said we did not need to bring Bryleigh. So I am very nervous/anxious to see what he has got to say. I will update when I find out. I am also going to upload pictuers. The easter bunny pictures did not turn out as I had hoped for them to. Bryleigh kept turning her head to the side so you really cant see her very good. Tyler has the biggest smile ever, he was so happpy to be holding a real bunny. I wanna get him one now, Michael said no. lol. But I still love the picture!!

2009-04-13T15:13:00.000-07:00

Doctor visit went good today. We got great news. There is no damage to her nerves. They dilated her eyes and did not see any damage to anything, everything looks normal. (I cannot remember any of the terms of what he looked at :-)) He however was not able to tell me if her vision was impaired. He said he would like to see her back in 6 months and maybe when she is 1 year he will have a test done where they put some electrodes on her head and flash a series of lights and measure her brain activity. I was thinking about this, and I was not sure if this is something that should be done sooner, say at 6 months of age? If a problem can be detected, we can do activities with her to stimiluate her eye sight. Just a thought. I do not know much about visual problems, but from what I have gathered some of the doctors have already done this test with the babies. Anyone have this same test done? If so, at what age?

Bryleigh has been smiling more and making alot of noises. It's so cute. She also has been doing really good at pulling herself up when I kind of pull on her arms.She really likes being in the sitting position. When I lay her back down she tries to pull her self back up :-) She is so adorable. Everytime she makes a noise or gives me a smile it makes me so happy! She is such a blessing!

Matthew's mommy,

Thanks for commenting on my last post. I'm not exactly sure how everyone responds t questions from their posts? Bryleigh did have a genetic test done after birth. It was called a chromosomal micro array test. Everything came back normal. I still havent heard back from the neurologist. I will be sure to post as soon as I do. I have read through yours, and Elisabeth's blog and it does seem like Bryleigh is alot like them.

Opinions Please

2009-04-08T17:15:00.000-07:00

Okay I uploaded some pictures. We have three dresses and three events she can wear each to, but I cant decide which dress to which event :-) The three events are:

A)Pictures with live Easter Bunnies
B)Church Saturday night
C)Easter Lunch at my moms

Now for the dresses:

1)

2)

3)

So which dress seems appropriate for which event :-)

Also, here is a new picture that we got of Bryleigh that I love!

Update

2009-04-07T17:40:00.001-07:00

Yesterday was Bryleigh's first apointment with the neurologist. He was very thorough in explaining things to me. He said that Bryleigh had several brain anomalies. I knew of some of them, but her neuro surgeon had not discussed any of them with me, I only knew of these things by requesting MRI and CT reports. At the appointment the doctor had all the notes from the neuro surgeon as well as the MRI and CT reports, so he was able to go over and show me where these things are. He said he thinks Bryleigh has significant vision problems. She did not track any object for him and that her bran anomalies are all in location that affect vision. He also said that she is behind for her age. I knew this though. He also said that he thinks she will have significant delays. He said when he says delay, he doesn't mean a delay she will catch up later,he means a long term delay. So overall the appointment was a bit depressing, but at the same time I really got alot of information. He called me back later that evening and said that he pulled up her actual reports and found something that none of the other doctors have mentioned. He said he did not want to discuss this over the phone and that he had a little more research to do before he wanted to talk to me about it. So now I am kinda left hanging here. lol. He said that it was something that could be that cause of the hydro, absent septum pellucidum, and agenis of the corpus calossum. In her first MRI scan it said that the corpus calossum was barely visible, but the doctor thinks that it is not there,by looking at the two different scans. So I have been a mad woman on the Internet trying to find what it could be that he thinks it is. So if anyone has any thoughts, let me know :-).He also said he is going to write my pediatrician a letter because he feels that the communication amongst the doctors is not that great, and that my pediatrician is not really communicating things with me good enough. He said that if his letter does not help, that he will recommend me a different pediatrician if I want one.

While at the apportionment he was asking me about some of her doctors, and what they have said and even their numbers. I kept getting the doctors confused because there are so many. So today, I put together a pretty little binder with a tab for each doctor, scans, etc. I put a cute little cover page and everything. I am really proud of my neatly organized binder. lol.

I will put some new pictures up soon. I haven't uploaded them to the computer lately but I will do that this weekend probably. I am taking Bryleigh and Tyler Friday to get their picture taken with live Easter bunnies. I cant decide which dress to put on her. I will put a picture of all three and you guys can let me know which one is the cutest. :-) I am very bad about making decisions. lol. So i guess I will be uploading pictures after all.

Monday we take Bryleigh to the ophthalmologist. I am really anxious to see what they say. Wish us luck!!

Neuro Surgeon Update

2009-03-23T13:49:00.000-07:00

Bryleigh had her CT scan Friday. They canceled the MRI of her spine that was suppose to be done. The insurance would not cover it for some reason. But if Dr. Price feels she needs one then we will have it done later on. She did really good for the CT. They put her to sleep for like 15 minutes. Afterwards we met with Dr. Price to go over the findings. She said that everything looked good with the shunt. Her ventricles had gotten smaller, and her head size had not increased. However, she did see what she thought was a small arachnoid cyst. She said that normally these do not cause a problem, but it can. She is going to have an MRI in 6 months to see if it has grown, if it has, then we will have to discuss surgery :-(. Also, she said that Bryleighs hydro was not aqueductal stenosis. I had read of a procedure ETV that can be done sometimes with the aqudectual stenosis. So Bryleigh does not really fall into that category. But, her fourth ventricle is small so she could possibly still be a candidate. We will not do this if the shunt keeps doing a good job. But if for some reason it fails, Dr. Price said we could discuss having the ETV. Everytime I leave the doctor I think of a ton of questions that I wanna ask. We have an appointment with a neurologist April 7th, so I will write all my questions down and ask him. We also do not have to keep her at an incline as much as we were, I will still keep her at the incline at night to sleep, but since she likes laying flat, i will be able to let her do that more.
Bryleigh is starting to track objects more! I think she was just delayed a bit. I have seen her smile, but not at me. Lol. We will get there. Her therapy is going good. She really tries to hold her head up. She has started sleeping all night!!! She goes to sleep around 10 and wakes up for a bottle about 6. This is when i get up to get ready for work, so its great. She falls back to sleep after that and will sleep till 10. She weighed 11lbs Friday. She has chubby cheeks :-)She is soo cute!!
Overall I think she is doing great!! We love her so much!!!

Pictures from my Phone!

2009-03-16T13:41:00.000-07:00

I had two recent pictures on my phone that I figured I could upload. She is getting so big!!

I took a picture and she happend to be grinning. I havent been able to see this again :-)

Laying on mommy's bed!!(Only for a minute )

2009-03-16T11:10:00.000-07:00

Wow I am really bad at updating my blog. I get on mostly everyday and look at others, but don't do much with mine! :-) I am back at work. This is my third week. I am enjoying being back, but miss Bryleigh. I found a lady to watch her that is near Tyler's new daycare. We really like her and are so thankful to have found her. Bryleigh is in the ECI program and when I told them where she was staying they got so excited. They said that she has a little boy that they currently visit, and have worked with her in the past and think she is great too. It helps so much knowing she is with someone who will take great care of her. Tyler didn't like his daycare at first. He said he "hated" one of his teacher. Not sure where he picked up that one, but he is 4 so there is no telling. But I have figured out that she is just a little more strict than what he is use to, but she is not mean to him. I was worried at first :-). But he is starting to like it alot more. I have a ton of new pictures, but all of them are on my computer at home. I will post some soon.
Bryleigh is still doing good. She has an MRI and a CT this Friday. They have to put her to sleep. I really don't like when she gets put to sleep, but the good thing is that I was able to get her CT and MRI on the same day. Took a little effort though. I also have made her an appt with an ophthamologist (can't spell). She is not really tracking objects. I thought she may be blind at first, but I really think she is looking at us now, she may just be delayed in that area. ECI is working with her on her tracking, they said last week she did reach out for a toy!! Woohoo!!So I have been trying this with her, but she doesnt seem interested when mommy does it. She is 2m3w now. She is not really smiling, which worries me a little, but given what all she ahs been through its probably not much to worry about. She has grinned at us a few time. So were getting there. She has kept me up all night one time. I was so tired at work the next day, but I did not complain to much because only one time is pretty good I think. Well I better get back to work!! I'll post some pictures soon!!

Back Home

2009-02-19T11:47:00.000-08:00

We got home last night! Our trip went great. Bryleigh was so good on the plane! She was awake more for last nights fligt, but she was content looking around.

Plane ride home~

She did so good during her infusion on Tuesday. She did not even cry when they started her IV. She tensed up, and I thought she was gonna cry but Dr. Kurtzberg did a great job and got it on the first try!! She slept through the infusion (which was only about 10 minutes. The doctors said she would smell like cream corn from the infusion. And she did, all night! It stunk. lol. They said that when they do the infusions the patients always get that smell.

~All the stuff to prepare for the infusion (her cord blood)~

~Awake after the IV was put in

~Sleeping after the infusion. She is getting IV fluids~

~Sleepy baby :-)

Wednesday we went and met with the neurologist. I have not yet met with a neurologist since Bryleigh was born because I did not think we needed one, but after meeting with him I think it would be a good idea to get one. Her neuro surgeon is great, but the neurologist goes over more issues. Her left eye appears to be maybe a lazy eye, but it could be something she will grow out of, it is not for sure though so we will meet with an optomologist and see. There are a couple others things that we will be going over with her peditrician just to make sure that they are okay. Overall I feel we got alot out of our trip. Everyone was very helpful, we arejust so grateful for the opportunity!!

We have Arrived!

2009-02-15T14:38:00.000-08:00

We are in North Carolina now. We left Dallas this morning around 7:30 a.m. The flight was actually only two hours. Bryleigh did great! She woke up to eat and went back to sleep. Since the plane was not full I was able to get a seat to put her car seat in, so I did not have to hold her the whole time. The weather is not much different from Texas. Tonight they have a chance for snow!

In the morning we need to be at the Duke Childrens Center at 9 for her to be measured, weighed, have blood work done, and a physical. Tuesday she will have the actual infusion! We are so thankful to have been able to do this!

I have not measured her head since the appointment with the neuro surgeon but to me it looks like her head has gotten a bit smaller. I can see the bones in her head more now, which to me would indicate that it has gotten smaller! I have been very diligent about keeping her upright (all the time) and I think its paying off! She still sleeps alot, kinda worries me sometimes, but then again it may be completely normal, i just was not use to it with Tyler (who never slept lol).

Well off to get some dinner! I will update on how things go tomorrow!!

Neuro-Surgeon Update

2009-02-11T10:28:00.001-08:00

Bryleigh had her first follow up appointment with the neuro-surgeonon Monday. We have not seen her since we left the hospital. So I was very anxious to see what her head size was. Well it was 44. This was the size it was when she was born. The doctor said she thinks her head is still to big. It had actually gone up 3 centimeters since we left the hospital. She did say that her shunt was still working, which is good. But apparently the fluid is not draining enough to make her size go down. I have been keeping her at an incline most the day and all night. Although sometimes when Michael left for work, I would lay her in the bed with me, and sometimes let her nap on my bed, so she was not inclined very much at all. The doctor said that we need to always be sure to keep her at in incline. So no more sleeping in mommy's bed I guess. I wonder if it will always have to be this way for it to work to its fullest? Doctor has us coming back in 1 month for a CT scan and a follow up with her. She said that if her head size gets any bigger from now until then, or does not go down any, that we will have to start pumping her shunt. She did it while we were in the office, it looked painful to me, but Bryleigh didn't seem to mind it at all and the doctor said it does not hurt her. When she pumped it I could see her soft spot sink in, that's how she knows the shunt works. If the pumping doesn't work we may have to consider a second shunt. Her incision sites look great and we also got the okay to lay her on the back of her head and on the right side (we were only able to lay her on her left because of the shunt on the right and the incision on the back of her head)

We also had an appointment with the occupational therapist last Thursday. We went to see them because Byleigh spits alot of her milk out while eating. We had been adding simply thick to her formula to increase the consistency. It helped, but took her foreveeerrr to get through 4 ounces, like an hour!! That's to long, and exhausted her. I tried using a faster flow nipple and it was way to fast for her, and she spit half of her bottle out. So the therapist had us go down to the slowest nipple with no simply thick. This has been the best option so far. While we were the I told the therapist that I noticed that Bryleigh always looked to the left, and held her head to left only. This is because this was the side she had been laying on since she was born. So we are doing stretches with her so that her muscles don't get to tight, and to encourage her to start looking to the right, and turning to the right. She seems to be doing good with this so far!! :-)

We leave Sunday to go to Duke for Bryleigh's cord blood therapy! She will actually have the infusion on Tuesday, but we need to be there by Monday morning. We didn't quite make it within the month of her birth, but its pretty close. My granny had free airline miles so thats what we are using to get there. That helped out so much!! I'm a little nervous about taking her on the plane, especially since its flu and RSV season. But I will keep her covered as much as possible. It is a three hour flight I think, so that's not to bad.

Home!

2009-01-29T12:42:00.000-08:00

So Bryleigh has been home for almost two weeks. She is doing so good. She sleeps really good at night :-). I wake her up every 3 to 4 hours to feed her and she goes right back to sleep. She only cries when I change her or bathe her. Totally different than Tyler (he cried alot). Her skin is still pretty thin where her shunt is. You can see one of the black dots that is on the shunt through her skin. The incision from the cephalocele is healing great. She can only be put down on her left side right now. When we go to the doctor on the 9th she may okay it for her to be on her back or her right side more often. She sleeps in a tucker sling right now. This just keeps her at an incline so that the fluid can flow more easily, and it keeps her from sliding down to the end of her bed. During the day she likes to sleep in her bouncy seat. She is not a big fan of the swing though. Tyler is only in daycare two days a week for right now. I figured since I am home, that I can save some money by keeping him home with me. He likes going to daycare so I did not want to completly take him out. I need to figure out what I am going to do about work. I would like to be able to stay home with her for awhile, but not sure if financially that will work. I need to start looking for something to do just in case. Bryleigh will be 4 weeks on Monday. It has gone by so fast it seems. She is still so little, her newborn clothes are still big on her. Well im gonna watch me som TV. Ellen comes on in 10 minutes!!

2009-01-13T19:04:00.001-08:00

Sorry I did not post an update sooner. I have been so busy lately. It is hard having a baby in the NICU and having a 4 year old at home. I did not see Tyler much last week and he really missed me.
Bryleigh had her cephalocele surgery this afternoon. Everything went great. They were able to remove the fluid pouch and close it up. The little piece of brain that was poking through was able to be pushed back in. Right after surgery she woke up and was able to be taken off the ventilator. She got back to her room and went to sleep. She slept pretty good for about two hours then woke up screaming. I think she was uncomfortable, hungry, and in pain. It was so sad. They were able to feed her through her feeding tube,and give her some Tylenol. I just called to check on her and they said that she was doing good. I spend my days at the hospital with her, and the nights here with Tyler. I hate not being able to stay with her in the evenings, but Tyler has been getting very upset when I am not here so I need to divide my time. The doctors said she should be home by the weekend. I am so excited.
Michael and I looked up the meaning to Bryleigh's name and it means strong and gracious. It is so true!! :-)
I will post pictures soon. I will also update more often. Thank you everyone for your support and prayers.

2009-01-08T20:37:00.000-08:00

Bryleigh is still doing great! Her head has gone down to 41cm. So the shunt is still working! The test on her kidneys came back normal. They had a hard time getting her blood for the chromosome test. They had to stick her 4 times. I hate that. But hopefully they wont have to take anymore blood. They also said that she was slight jaundice. But not enough to be treated for. Her pediatric doctor said that since she is doing so well she will probably be going home soon. We will wait and see what her neuro surgeon says. I will be discharged in the morning. She was spitting up alot this morning, but did alot better throughout the day. I got to feed her and change her diaper a couple times today. Tonight i accidentally poked her cephalocele. I got so worried I hurt her but the nurses kept assuring me that I didnt, that it is just fluid, and that it did not hurt her. I still worry :-). The size of it has decreased alot so the skin is sort of wrinkled now. Well I will hopefully have an update tomorrow on if she gets to go home!! I am nervous, but I know she will do great!!!

Bryleighs Surgery Update

2009-01-07T20:53:00.000-08:00

I tried updating last night but was not able to put the pictures on here that weren't huge. I am going to try again. Lol.
Well, Bryleigh had her shunt surgery this morning. The surgery went very well and so far everything looks good. Her head size went from 44 to 42cm already. So this is great. The doctors did not do surgery on her cephalocele because they think since its so small, (the actual hole in the skull)once the pressure is relieved from the hydro that the fluid pouch will decompress some. And it has, its not as big as it was. They are hoping that it will completely go down and that they wont have to close the actual hole in her skull. This will be better, so that Bryleigh does not have to have another surgery right away. She has been asleep for most of the day. When I went down to visit tonight, she was starting to show some discomfort. The doctors said that if they have to they will give her some medicine for pain. They are also having a hard to keeping a good iv in her. She has been stuck quite a bit. I feel so bad for her. She is overall pretty content being wrapped up in a blanket with a pacifier in her mouth. I can tell that she enjoys it when mommy and daddy get to hold her :-). She is so precious.
The pediatric geneticist (spelling?) came to see her this evening. She said that everything looks great, of course except for the hydro and the cephalocele, but everything else appears great. She ordered a kidney test be done on her tomorrow. There is certain genetic disorder (can not remember the name) that includes the cephalocele, kidney problems, extra limbs, etc. She believes this screening will come back negative, but would like to rule out any possibilities. They are also going to do a chromosomal micro array study on her tomorrow. They will have to take her blood for this :-(.We wont have the results on that for two weeks. She also recommended that I have a few test ran on myself as well, because even though I don't plan on having other children, its still something to know, for other medical reasons.
I am probably going to be released this Friday. I wish Bryleigh could join us, but the doctors said that we will just have to wait and see how things go. Thank you for all your support and prayers. I am trying to stay strong, I catch myself wanting to break down at times, but I am sure that's normal :-). Thank you again and I will keep posting.

Our fist picture together!

Daddy giving kisses!

Getting to feed her!!

Before surgery

Right after surgery

Tonight

2009-01-05T17:37:00.001-08:00

This is one of the pictures I was able to get earlier while i was in the NICU. She was fussing at the doctors but as soon as I got her she went to sleep. :-) she is so precious! I have not gotten to go back to see her again. I'm waiting till they give me the go ahead to get up. They said she did really well during her MRI. I can not wait to see her again.

Bryleigh Is here!

2009-01-05T14:25:00.001-08:00

Well Miss Bryleigh made her arrival today at 11:34 weighing 7lbs 4oz 19.75 inches long. She is doing very very well! They said she is acting as though she has nothing wrong with her! Doctors say she is a feisty one. Her head size is 44cm. The cephalocele is very small too (great news). She is going to have an MRI today and they will let us know how they are going to proceed as far as her surgeries. Thank you everyone for your prayers and kindness! I'm gonne get to go see her again later tonight when I am able to walk so I am gonna get some rest. I will post pictures as soon as I can!

~Stephanie B.

Still hanging in there

2009-01-02T21:47:00.001-08:00

Well im still having contractions that just arent doing anything. I have been so miserable, but my doctors just tell me it normal. Kristen left me a comment about not being able to dilate because of her not dropping in the birth canal (this pressure helps you to dilate). Since Bryleighs head size is bigger than average she just may not be able to drop. I know she has not dropped because Wednesday the doctor said she hasn't. This made alot of sense (thanks Kristen :-))so I called and asked my doctor. They said to hang in there that i did not have much longer. So I never really got an answer. I just pray that my contractions and stress aren't causing stress on Bryleigh because she definatly doesn't need anymore. I am 37 weeks now and have my appointment for a sono on Monday so hopefully I will find more out then.
We are currently adding a room on to our house and this has caused serious clutter and mess around here. Hopefully this weekend we will get done and get the house back to normal because it's driving me crazy LOL. I also would like it all done before I have Bryleigh.
Well I better get some sleep, got a busy weekend ahead! Hopefully Monday will be our big day!

~Stephanie B.
Sent from

What a Week

2008-12-31T20:08:00.000-08:00

This week has been exhausting! Monday I went in for my weekly routine sonogram and the doctor told me that they would not be doing an amnio on the 5th. He said he would decide that day whether or not from the sonogram findings if they would be doing the c-section that day or waiting until the 12th. So I got a little frustrated, I was hoping that since she was 37 weeks they would go ahead and deliver her. I also don't like the fact that Monday when I go into the doctor I will not know whether I'm staying or going home. They also were not able to give me a measurement of her head. They said it was "out of range"? Her average weekly increase has gone up. So this too bothers me alot.
Well...that night I started having some pretty painful contractions every 3 to 4 minutes. After a couple hours of this I decided to go ahead and go in to the hospital, which was about 10:00p.m. I continued to have these contractions throughout the night into the morning even though they were giving me medicine to try and stop them. They gave me some medicine for the pain and to help me sleep, but it just was not working for me. Since I was not dilating they did not consider me to be in active labor. I was given the option the next morning to stay in the hospital until I had her or go home. I chose to come home. So Tuesday I literally slept all day. lol. I was so exhausted!! Today I had an apt. with my ob doctor and still have not dilated, but still have the contractions, just not as regular or as painful.
Well I wish everyone a safe and happy New Year! I am probably going to fall asleep pretty soon. So much for being awake to ring in the new year!! lol.

A little over a week left!!

2008-12-27T18:26:00.000-08:00

I have not updated in awhile. I have been so busy with Christmas, work, doctor appointments, and family. Time is going by so fast!!
Well, at my last sonogram the doctor said he would like to check for lung maturity on Jan 5th instead of waiting until the 12th. He said that her head size and ventricles are increasing at a more rapid pace. She was about 7lbs as of last week. This Monday I will have another sonogram, so I am really praying that things slowed down a bit, and maybe she had just hit a growth spurt or something. She has not been near as active as she use to be. But maybe she is running out of room. On the 5th they will do the amnio and if she is good to go, they will do the c-section on the 6th.
Today we went and bought a few more last minute items. I also washed her clothes and put the rest of her things away. Everything was in bags in the living room. lol. I finally got the energy today, but am paying for it all now. I can barely move. I am getting so miserable. But not much longer. I will probably post before I have her, but if not I will be sure to post pictures as soon as I can!!

5 Weeks Until Our Big Day

2008-12-08T14:00:00.000-08:00

Today I am 33w3d. I am now scheduled to have sonograms once a week until her delivery. I had a sonogram today and her vent size is now averaging 32mm on right and left, 3rd ventricle is 11mm. Her head size is at 39w5d. She weights 5lbs 13oz. I am guessing she is gonna be a big little girl. The doctor said her assigned gestational size by sonogram is 36w. Maybe I am just a big baby but getting up to do anything is painful. Lol. I still have 5weeks too!!! Maybe they will take her a bit sooner so long as her lungs are mature. We don't want to have other obstacles for Miss Bryleigh to overcome!
I had my baby shower on Sunday. We got pretty much everything we needed. Of course I am not done :-). There is still some things that I want. I still haven't started on her room yet. I will get to that as soon as Michael fixes a few things.
I also had my tour of the NICU last Wednesday. It went really good. I am so glad that I got to do that. It really helps seeing where your baby will be staying, and them going over the process of delivery, etc with you. I was told that she would be having a surgery within 24 hours to fix the cephalocele on her head. They did tell me that they had never see one as small as hers. This is great news. We love hearing good news!! They said that she would probably require a shunt, but that would be scheduled within her first week after birth. The doctors are very encouraging about everything. I am so excited and nervous. We just have to keep praying for her. The closer I get the more excited I am getting. I know this is normal, but I have had a hard time being excited throughout the whole pregnancy (since I found out about her condition) especially with some discouraging doctor visits, etc. But now that I have a better understanding of everything, and we are getting close, I am very excited!!

Getting Closer

2008-12-02T19:12:00.000-08:00

Well not much has happened since my last post. We are still waiting on the arrival of Miss Bryleigh. I only have a little over 5 weeks. Getting so close!! I had a sonogram last Monday and her head size is still measuring 4 weeks ahead of her gestational age. She was about 4.5lbs. Her ventricles are averaging 30mm on the left and right. And her 3rd ventricle is about 7mm. She seems to average an increase of about 6mm a month on her left and right. I have started meeting with my OB doctor every two weeks, and my sonogram doctor every two weeks. My next sonogram is Monday. My doctors still want to stick with January 12th as her delivery date. I am already so uncomfortable at times. I don't remember all this with my son Tyler, of course I worked out through the whole pregnancy, whereas this one I haven't ;-). Tomorrow I go for a tour of the NICU and meet with a neonatal doctor. I thought this would be beneficial so that we will have some what of an idea what to expect after she is born (I'm getting very nervous). She is a very active little girl already. She is constantly moving and kicking. She really starts when I lay down on my back at night.

Tyler is getting very excited about becoming a big brother. He looks at my belly and I ask him if he likes mommy's big belly, he tells me he just loves Bryleigh. He had his head laying on my stomach the other day and he could feel her kicking. It was so cute, he got so excited.

I can not believe its already Christmas time. We have not started our shopping. I will probably start this weekend. I feel like we have so much going on, but it does help keep my mind off of things. I also am having my baby shower Sunday. We still need to start on her room. So I have plenty to keep my busy until the time comes.

From the Beginning

2008-11-10T10:48:00.000-08:00

I started this blog in hopes to help other mothers who may be going through the same thing and for my family and friends who may want to follow our story. I have yet to face the hard part of dealing with everything first hand as I am still pregnant. But I figured posting about our journey with hydrocephalus I may be able to provide some reassurance or help to other mothers going through this as well. I have found many of the blogs helpful and would like to contribute what I can to others.

Me and my fiance (Michael) went in to my perinatal doctor to find out what we would be having. During the sonogram the doctor took all the measurements without saying much. He ended the sonogram and told us the bad news first then the good news. Well the good news was that we were having a little girl!! The bad news was that she appeared to have spina bifida and a Chiari malformation. An amnio was performed that day to see if there were any problems genetically (two weeks later we received the results and there were none)We were then sent over to meet with my regular OB doctor. She was very persistent on terminating the pregnancy saying she has multiple problems and that things did not look good for her outcome. We knew we would not be choosing this option. If God gave us this little girl and she was still living she was doing so for a reason. We asked her to send us to a different perinatal doctor for a second opinion. Her words were "He is the best, you do not need a second opinion". With that we were sent home.
Well needless to say I was not satisfied. We found a perinatal doctor on our own and had an appointment with him within a week. He was alot more thorough during the sonogram. He explained things much better than the first doctor. He did not see any sign of spina bifida. However he did see a small cephalocele on the back of her head (very small did not contain brain tissue). Her ventricles were enlarged and she appeared to have a Chiari Malformation.
I have since had many sonograms as well as a fetal MRI. It has been concluded that Bryleigh has hydrocephalus, a small cephalocele on the back of her head, and Arnold Chiari Malformation II. Normally with the ACMII and the hydrocephalus, babies do have spina bifida, Bryleigh does not. At my last sonogram I was 27w3d her ventricles were measuring at 23mm and her head size was measuring 31w (4 weeks ahead). Bryleigh will likely have a shunt placed following her birth to releive the pressure caused by the hydrocephalus. My OB doctor (I have switched) has my c-section date scheduled for January 12th, 2009. My original due date was January 23rd, 2009.

We are going to be preserving her cord blood at birth and plan on having her infused within a month after birth at Duke University in NC. This is not a proven method but it is believed to restore some cognitive brain functionality. We will have to travel along ways but I believe it is worth it if it can possibly help our little girl in any way. I learned about this by researching on the internet and I came across a great site http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx.

We just pray everyday that everything will work out for our little girl. She is our little miracle and we cannot wait to welcome her into this world.

*Bryleigh Marie*