September 29, 2009
September 28, 2009
September 24, 2009
September 23, 2009
September 22, 2009
September 21, 2009
At least, that's what she told Doctor Jacob.
September 18, 2009
Sometimes the evening goes smoothly and the kids go right down, no problems. Other times, it is a battlefield of sorts. Some nights its a battle of wits. Other nights its a battle of bronze. But once the dust settles, and all have signed the peace treaty which includes the traditional exchange of hugs and kisses... and gummy bear vitamins, the sounds of peace are so great, I just have to go and check on my conquerors. I just have to make sure they are all tucked in and cozy warm.
But I have to admit, even I can be surprised at what I might find. There is such a thing as too cozy warm you know.
September 15, 2009
September 14, 2009
Its so nice to be home and to finally be able to sleep in a bed. Although, its kind of like having a newborn again. I get up around the clock to give her her pain meds and antibiotics. Every little cough or whimper has me jumping out of bed to check on her. But she is doing so well. Even back to crawling around on the floor.
September 11, 2009
A little before 9am, Dr. Siddiqi came to check on Alayna and was surprised to see that her eyes weren't more swollen. He then took off her head bandages.
I wasn't quite prepared to see the size of her head from the swelling or that her whole head was shaved. (sniff) I miss her long, wispy dark hair.
The doctor said it was just loose fluid and since she had been laying on her back for so long the fluid just went with the pull of gravity, to the back of her head. After she sat up for a while, much of the swelling went down. That tube behind her ear is the drainage tube that helps drain the fluid from her head. It will probably come out tomorrow which will probably make her swell up a bit more.
She only had morphine twice today. Her biggest problem was that she kept throwing up everything we gave her. Poor girl, it hurt to throw up and cough. It put a lot of pressure on her head. But about the middle of the day they gave her something to help her poop and also gave her some medication for acid reflex which seemed to settle her stomach really well. So her afternoon went pretty smooth. She even tried out the Bumbo chair... isn't that what's its called?
By the end of the day the swelling had gone down from her eyes and a little from her head. We are so proud of her. She has been a tough little girl and we are so proud of how she has been doing. And we feel very blessed that things have gone so well for her.
September 10, 2009
It was probably an hour or so later they decided to take some of her lines out. They took the IV out of her hand. That made her so sad. But it was so much worse when they took the central line out of her neck. Poor thing was crying a hoarse little cry. Once they removed a couple other things they said I could hold her and try to calm her down. You could tell it hurt her a lot of be moved cause she was just screaming. Once I got her settled and calmed her down a bit we gave her a little more juice... which she threw up all over me not too long after.
Not long after moving to the floor and out of the PICU, we could see that she was swelling up a little again. We'll see what she looks like tomorrow. But even though her head is a lot more swollen now than when I took the above picture, I am very hopeful that her eyes won't get too bad and won't swell shut.
We keep a close eye on her heart rate since that is the first sign of when she is in pain. Its hard when she cries. But daddy has been great. He has been strong for both of us girls even though I know it hurts daddy to see his little girl in so much pain. He has been awesome.
Right now she is asleep after getting a dose of morphine and a couple ounces of formula. I hope she rests well tonight.
Thank you again to everyone for offering prayers in her behalf. Truly, thank you. It has been a great comfort to us.
She looked so sad. So swollen. She was pretty doped up on morphine. She was getting some about every hour there at the beginning.
When she did wake up enough to peek out of her swollen little eyelids it was usually because her breathing tube was clogged or because she was in so much pain.
I have never experienced ANYTHING as heartbreaking as watching her try to cough or cry without the slightest little sound coming out because of the tube down her throat. I think the tube really scared her. Made me cry every time.
They usually try to take the tube out right after surgery but because she still had remnants of a cold leftover she had some buildup and since her throat was swollen they were worried about her being able to breath on her own so they decided they would leave the tube in overnight.
We stayed with her the next several hours in the PICU. Thankfully they weren't too terribly busy and we were able to get a "sleep room". A room with a bed just off of the parents waiting room were we spent the night.
I was so tired the nurses told us to get some sleep since she would be on morphine and will sleep most of the time. They said she would be more awake the next day so we would want to be there for her then.
Finally at 10:30pm we crashed. But I kept having weird dreams so at 4:30 this morning, I woke up and decided to go check on her.
September 8, 2009
I wanted to punch her, yell at her, shove her away... maybe even pull out her little nose ring.
Does that make me a bad person?
It was suppose to be just a little blood draw from the vein in Alayna's arm. Like when we give blood. No biggie right?
That girl probed Alayna's arm for what seemed like eternity then finally declared she found the vein. She inserted the needle... and missed. Then without ever pulling the needle out all the way she kept pushing and poking back and forth for seriously three or four minutes which is a heck of a long time when your little tiny baby in your arms is screaming so hard she can't even breath.
If she had waited any longer to call for help from another nurse, I think I would have done something bad.
The other nurse walks in and in less than a minute, got the blood from the other arm.
It took every ounce of self mastery I could muster not to glare or be rude to the nurse with the nose ring. I kept wanting to cry I felt so bad for my baby.
If today was bad, I can only imagine what tomorrow will be like.
Still, I must repent or I might have nightmares about evil nurses with nose rings.
September 6, 2009
Just asking... for no particular reason.
So, I brought out the leftover pasta and said they could have some while the pizza was cooking.
It become apparent that I wasn't moving quickly enough when, after putting the leftovers on a plate and had turned away to get something for one of the boys, Savannah with hands on hips very sternly says to me,
"And if I don't see it in the microwave, I am simply going to starve to death!!"
Well heaven forbid. =)
September 4, 2009
Well, we just heard yesterday.
Alayna's surgery is scheduled for next week. Wednesday September 9th. We'll be fasting for her on Sunday.
Luke had to cancel a business trip but I'm glad he'll be able to take work off the whole time we'll be down at the hospital.
Well, in happier news, Alyana started crawling last Saturday! I took these video clips a couple days ago. Since then she has become a bit more efficient. She made it from the living room, down the hall to the bathroom.
The era of keeping doors closed has begun again.
Oh and uh, forgive the high pitched barking dog in the background. I can only hope Joseph's voice will... deepen with puberty. =)
September 2, 2009
I have my box of tissues.
I have my notes.
I have a few minutes of peace.
Here we go.
The surgery Alayna will have to go through will be a lot more... involved than we originally anticipated.
Yes, she will have to have the bigger surgery as the smaller one I had mentioned before is only done on babies younger than 4 months.
So, this is more or less how it will go.
It will require two surgeons. The pediatric plastic surgeon will do about 90% of it and a neuro surgeon will do about 10%.
The plastic surgeon will cut open her scalp, ear to ear in a zig zag pattern. This is done so that when her hair grows in it will cover the scars otherwise her hair would part right where the scars would be. I think there was something mentioned about it also helping the skin not to open up to much... or something. I kind of missed that part.
Then the neuro surgeon will step in and actually cut out and remove the head plates from off her head and hand them in four pieces to the plastic surgeon. He will then take them over to a table and reconstruct them, allow room for growth and what not, put it all back together with plates and screws that will dissolve in about a year. He will then finish out the surgery by putting her head back together and sewing her up.
The surgery takes about 4-5 hours. And since Alyana is so small and will loose so much blood she will most likely have to have a blood transfusion as well.
She will spend a night in the ICU and will be on narcotics for a couple of days. Even so she will be quite sore, groggy and uncomfortable. By the second or third day she will be quite swollen. I was told her eyes will be swollen shut.
There will be a drainage tube that will run under her forehead which will be pulled out by the fourth day. By the fifth day the swelling will be going down and she should be able to start opening her eyes again.
So, one night in the ICU and four nights in the hospital, then we bring her home.
It will take a good three weeks for the visible swelling to go away and another 6 months before the deeper, non visible swelling goes away.
The whole surgery is done outside of the protective lining (like a thin leather) that covers the brain so the chances that anything will happen to her brain is very slim. They said the biggest risk will be blood loss.
While we where there they took x-rays of her neck since the surgery is preformed with her laying on her stomach with her chin propped up on something so they needed to make sure her neck was alright.
I'm doing okay. As long as I don't think about it too much or conjure up any images. The surgeon, after telling us everything kind of gave us an odd look and said, "You guys don't seem surprised." I told him we had a bit of a heads up that surgery would be needed but the details were still sinking in.
Anyway, they had to coordinate the two surgeon's schedules so I'm suppose to hear back sometime today as to the date of the surgery but they were thinking it will be sometime within the next month. I'll let you know when I find out.
The only bits of GOOD news are that the surgeons said they preform this particular surgery a couple times a month so they have lots of experience. And she will NOT have to wear a helmet when this is all over.
Well, that's about it for now.
Anyway, the house is WAY too quiet. I better go find the boys and make sure they aren't getting into anything.