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Thursday, January 29, 2009

Home!

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!!


Tuesday, January 13, 2009

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.

Thursday, January 8, 2009

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!!!

Wednesday, January 7, 2009

Bryleighs Surgery Update

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

Monday, January 5, 2009

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.

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Bryleigh Is here!

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.

Friday, January 2, 2009

Still hanging in there

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.
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