Saturday, October 29, 2005

They're coming home!!!

Exactly one month after the baby getting sick, my friend and her family are coming back home. They're scheduled to be released from the hospital on Wednesday. For the first little while, they are going to have a nurse live with them 24/7 to help take care of the baby. Apparently, they were finally able to find the right dosage for the seizure medication, and it's made a big difference. The baby's more alert, looking around, and moving her hands and arms more normally. Yay!

Wednesday, October 26, 2005

I have found out...

...that the kind of day I'm having is directly related to how Kaylee naps. Like yesterday, she took a couple of really good long naps, and she was happy all day. And I had a really good day. Today, she just won't sleep. I lay down with her this morning, nursed her to sleep (like I always do), but she decided to wake up after only 15 minutes. So then I lay down with her at noon for her afternoon nap (for which she usually sleeps 2 - 2.5 hours). It's now 1:30, and I've laid down with her 3 times now. She keeps waking up and screaming, obviously not ready to wake up. So I nurse her back to sleep and lay with her for a bit, only to have her wake up again shortly after I leave the room. I'm about to lose it. In fact, she's crying right now, and I just had to leave her for a few minutes, I'm so frustrated. Needless to say, my day is not going well. I'm not getting anything done. All I'm doing is dealing with a cranky baby. And Bryan's not taking his nap, either, so I just know what kind of afternoon we're going to be having... :o(

Tuesday, October 25, 2005

As for news about my friend's baby...

...the little girl got her tracheostomy and feeding tube in last Thursday. She's doing fairly well. The doctors are now trying to figure out the correct dosage for seizure medication. They think it's all the seizures she has that keep her from fully regaining consciousness (sp?). I asked my friend about the long-term prognosis, and she said right now they're just hoping that she'll be able to hold up her head on her own and smile. That's it. So very sad, how life can turn upside-down in what seems like a second (and stay upside-down forever). :o(

Fun Fun

Yesterday, when I picked up Tyler from school, he blurted out "my teacher showed us her underwear!!!" After the initial shock any parent would feel after hearing such an announcement from their Kindergartener, I figured out that the teacher really just showed part of her shirt. Essentially, she was wearing two t-shirts, and showed the children the one underneath to explain that she could wear that on top for "crazy dress day" (which is today). Out of the mouths of babes... HAHA.

This morning, I watched my friend's older two kids (their dad brought them up for a little while today). It was like "that's what it would be like to have two sets of twins and a baby". They had a lot of fun, though. After I dropped the older two off at school, I took the younger two and Kaylee to the store. They have those shopping "cars", where the little ones can sit in a car that's attached to the shopping cart. So fun! I also felt like Kaylee needed to get her hair done today. Here's the result.

Friday, October 21, 2005

What a beautiful day

Today really was a wonderful Fall day. Dave slept in with us this morning, and we had pancakes for breakfast. Then he went to school, and the kids and I just had a relaxing morning. Kaylee and Bryan took long naps (2.5 and 2 hours respectively), which was great! Then we played outside all afternoon, and it was so much fun. 60 degrees and sunny weather, just beautiful. For dinner, we went to Costa Vida, which was quite good. The boys got a nice long bath before bedtime, and Kaylee is just about ready for bed now. Gotta love good days. :o)

Wednesday, October 19, 2005

Something's going on...

...and I'm just not sure what it is. My friend's little girl is going in for surgery tomorrow to put in the tracheostomy and the feeding tube. It starts at noon, and should last approximately 3 hours. The neurosurgeon said he may not do any brain surgery after all. I guess the baby hasn't really progressed much during the past two weeks, and they don't think she'll improve much even with surgery. I.E. the surgery wouldn't do any good, really. I'm not sure that makes sense to me. I thought all along the surgery on the brain was to make sure there wouldn't be any more bleeds? I don't know... They're not giving my friend much hope that the baby is ever going to be anything but a baby. Meaning they think so much of her brain was damaged that she'll probably need lifelong care, and won't ever do anything. So terribly sad. I refuse to give up hope for her, though. She's such a strong little girl.

Then there's a couple in our neighborhood who are expecting twins. She just got put on bedrest, she's 30 weeks now. So they're gonna need help, too. I'm just not sure what's happening here? Maybe my life has been too sheltered so far, but all of a sudden I have all these friends/family with medical issues. I sure hope November is going to be a better month. October has been pretty awful so far...


Kaylee is taking her second nap for today, in bed by herself! Sure, it's in MY bed, but hey, at least she's sleeping without me needing to hold her. Major progress... So, I should go clean my house, but it's so nice to be able to just sit down and do nothing for a minute... :p

Monday, October 17, 2005

My niece had surgery today

Her skull had fused prematurely, so they had to do surgery to correct that. The surgery was today. I guess it went well. They moved her left eye? I didn't know they could do that...
EDITED: They didn't actually move the eye, haha. What they did was reshape the bone around her left eye, so that it looks even with the right eye, and they moved up her left ear. Now that makes more sense.

On a different note, I'm feeling homesick today. It's one of those days where I just want my mom... :o( I was thinking about how we've lived here in UT for a year now, and how I'm starting to make some really good friends. And then I almost get depressed, because I know in 2 or 3 years we'll likely move again, who knows where. It's so sad to have to leave good friends, and then start all over. One of those days where I miss having my family close by.

Saturday, October 15, 2005

Yet another update

Talked to my friend's husband today. The plan for their little girl is to get a tracheostomy and a feeding tube put in sometime next week. This should help her breath on her own, without aspirating. It also means that she will be able to move out of ICU! After she heals from having the trach and tube put in, she will undergo surgery to fix the fistula in her brain. Once she recovers from that, and her parents learn how to take care of the trach and the feeding tube, she can hopefully come home! :o)

Friday, October 14, 2005

It's nice to have friends

So last night, two very good friends of mine and I went out to Olive Garden. One of them is due to have a baby in a couple of weeks, so we thought it'd be fun to have a Girls' Night Out (instead of a baby shower). It was so much fun! The husbands all watched the kids, so it was just us ladies. We had such a good time together, sharing a good dinner, chatting, laughing... We're planning to do this again in a few months, when the other friend is due to have a baby. Hopefully we'll be able to bring along our other friend (the one whose baby is sick right now). The four of us have become really good friends over the summer. It's nice to know that were something to happen, someone would be right there to help. Yay for friends! :o)

Thursday, October 13, 2005

It's surgery day

And I've been crying off and on all morning. I sure hope the doctors will be able to know how to best help this little girl. I'm really hoping to hear good news later today. I can't even begin to imagine the agony my friend and her husband must be feeling. What a difficult thing to have to go through.

EDITED TO ADD: Apparently, the surgeon wasn't back in town yet, so no surgery Thursday. Possibly today (Friday)? Haven't heard yet.

Wednesday, October 12, 2005

UGH, why make plans????

So, the one day I'm actually planning on getting things done in the morning... We're pretty much completely out of groceries. So Tyler only had an hour of Kindergarten this morning, and I thought, good, I'll pick him up at 11:00, and we can all go to the store. Well, I try putting Kaylee for a nap at 10:00, and she will only sleep in my arms while I'm rocking her. Every time I try to put her down, she wakes right up. So at 10:30, she's done with her nap. I put her on the floor to play with Bryan, and run out to hang the diapers on the clothesline. Get back in, have 10 more minutes before I have to go pick up Tyler. So I'm thinking, good, I'll nurse Kaylee, and off we go. Well, wouldn't you know it, instead of nursing, she decides to scream at me. So we go pick up Tyler, and instead of going to the store, I have to deal with a screaming baby. AAAAAHHHHHHH!!!! Seriously, the one morning I actually make plans to do something.... Speaking of screaming baby, we're having another meltdown...

Sunday, October 09, 2005

Wow, what a crazy weekend

Sunday afternoon, and I finally get a minute to sit down. We had such a busy day yesterday. Homecoming parade in the morning (too much candy!!!), then a trip to the library, then the football game. The game was fun, except for the fact that we got rained on pretty much the whole second half. It wasn't heavy rain, but steady. Oh well, it was worth it, I guess, USU won. Go Aggies! :p During the game, Tyler and Bryan got on each other's nerves quite a bit, which ultimately resulted in Tyler's teethmarks being left on Bryan's nose. Ah, brotherly love... Here's a couple of pictures, one of Bryan with Tyler's teethmarks, the other Kaylee enjoying the rain (or umbrella...).

Saturday, October 08, 2005

She's breathing on her own...

...and is even starting to cough a little to clear her lungs on her own (they still have quite a bit of fluid)! My friend's husband stopped by for a couple of mintues last night and told me about their little girl's progress. It sounds like her lungs are pretty weak still but she's recovering and on track for surgery on Thursday. I'm planning on driving down sometime to go see them, but still need to figure out the details as far as what to do with the kids.

Wednesday, October 05, 2005

A little girl's fight for life continues...

...and I feel so helpless. I can't even give my friend hugs anymore, because the hospital is almost 2 hours away. :o( They did some tests and an MRI on the baby yesterday. The MRI showed that one side of her brain was quite damaged, and the arteries through which they were going to try and fix the problem are too weak. So they'll have to do actual surgery. They also did an EEG, and during the half hour that they monitored brain activity, the little girl had 3 seizures. By the end of the day, all the moving around got to be too much on her, and her vitals started going all over the place. So they had to put her back on the ventilator. Since she reacted so badly to all the moving about, they've decided to put off the surgery for a while. It'll be a week from Thursday at the very earliest. That should give her little lungs some time to get stronger, so hopefully she'll be able to withstand the trauma inherent to surgery. This little girl is such a miracle baby for my friend. Based on some past history, she thought she was done having kids. Then got pg with this little one, and her pregnancy was so vastly different from the others, all in a good way. No bedrest, no preemie baby, in fact, she went a few days past her due date. She had the baby at home after two previous c-sections, and everything went so wonderfully. The baby was born big and healthy and strong. She truly is a miracle, and she's been a fighter so far. I strongly believe in the body's abilty to heal, especially in little babies, and at this time, I have to believe that this little girl will come out of this okay. My friend said she feels that if the baby survives, she'll likely need life-long care due to the damage lack of oxygen and bleeding did to her brain. I need to believe something good will come out of this. My friend has been through so much already, she just needs to get a break sometime. Life can surely seem unfair sometimes...

Tuesday, October 04, 2005

Good news for once!

My friend's husband called last night. The latest news is that they found out the baby has a fistula in her brain. What that means is that there is a connection between the artery and the vein. This doesn't usually require treatment, but since the baby has already come so close to death, they will likely do surgery. Apparently, the fistula is at a place in the brain that they can easily get to, and it sounds like the surgery would be pretty easy and safe (for brain surgery, I suppose). The baby is also out of immediate danger at this point, so it sounds like things are looking up a bit. The doctors are meeting today to discuss further treatment, so hopefully we'll get some more good news later today. I wish I could be down at the hospital with my friend. I can't even begin to imagine the emotional rollercoaster she must have been on since this all started Sunday afternoon. Her husband told me she had gotten probably an hour of sleep since all this started. I hope that she was able to get some more rest last night, after seeing that the baby is coming around and there is something that the doctors can do to help. How scary it must be to see your baby hooked up to life support, to know the baby had to be resucitated several times. My worst nightmare. :o(

Monday, October 03, 2005

More news

It appears the baby has/had an aneurysm in her brain. It looks like it was some type of congenital defect. Heart murmurs are also common with this defect, and her mom had had her heart checked especially looking for murmurs earlier, as her other two children had both been born with heart murmurs. But the baby's heart was just fine. It appears the aneurysm ruptured and caused bleeding in the brain. The baby is pretty much just being kept alive right now, hooked up to a ventilator. The prognosis is not good. I feel so incredibly sad for this family. :o(

My heart is breaking

For my poor friend. I just got off the phone with the hospital, and the baby is in ICU in critical condition. That's all they could tell me. I just feel sick. I go between crying and trying to be positive. It's just so incredibly sad. :o(

Sunday, October 02, 2005

Praying for my friend's little baby

She was life-flighted to SLC Primary Children's Hospital just a couple of hours ago. She's five weeks old. She was nursing this afternoon, and just stopped breathing. They had to work on her for quite some time to get her breathing again, and get her heart beating. It took a while for her to be stable enough to be life-flighted. And they weren't sure she was going to make it to the hospital. It's touch and go. I'm just in shock. My poor friend has already lost a baby due to some complications when she was at 20 weeks pregnant, no mother should have to go through losing two babies. :o(