Wednesday, July 29, 2009

Who Are you?

Isabelle finally slept all night last night until 6:15am. Yay!!! Medically speaking I do not have any news or updates. However, I do have some really great pictures and a video for your viewing pleasure!








Also, because I have decided to eventually turn these blogs into a book for Isabelle when she is older I would love for her to know who all was reading her story and praying for her. A few of you have left comments but many who visit have remained anonymous. I have been getting hits from all over the United States and even a few in the UK. Please feel free to leave a comment on this post and let us know who you are. We would LOVE to know!

Tuesday, July 28, 2009

Sooner Rather Than Later

We just got back from Isabelle's check up a little while ago and here is the long and short of it:

The good news: The part of the spine that was fused (C2-C6) looks good. It is still lined up like it's supposed to be and none of the screws or plates have slipped. Her pin sites still look good and are still infection free so far. We do not have to go back for another check up for four weeks.

The bad news: C1 and the base of Isabelle's skull are still not lined up like they need to be. We knew this before Isabelle left the hospital so this is not new to us. However, before we left Isabelle's surgeon made some adjustments to her halo in hopes that this would help the alignment. Obviously it didn't. It is likely he will have to go back in and fuse all the way to the base of the skull sooner rather than later. Again, we knew this before leaving the hospital but we were still hopeful that the adjustments he made would help out a little. The plan is to continue along as is and see what happens once the halo comes off. He obviously wants to wait as long as possible both for growth and recovery from the first surgery. Unfortunately this is one of those things where there is no way to know when it will have to be done. Sooner rather than later can mean two months or two years as opposed to ten or more.

So, to answer the question of whether or not the fusion worked. Yes and no. The worst part of Isabelle's spine that was causing the most danger has been fixed as long as the fusion continues to hold. However, because Isabelle has a syndrome that causes spinal instability it is hard to get every thing perfect.

Please continue to pray for Isabelle and the alignment of her spine. That she will remain out of danger from spinal cord damage and her spine holds up for a few more years (or more) so she can grow.

Monday, July 27, 2009

Check Up Tomorrow- Please Pray

I hope this post finds everyone well. I apologize for not having many updates about Isabelle the past few days but frankly I have not had a whole lot to write about. I guess no news is good news though! I have also been hoping that the lack of Belli updates would help you guys concentrate on sweet baby Stellan and his family who is in much more need of prayers right now than my sweet Isabelle who is doing VERY well as of now.

She still has not gone poopie...yikes! Don't worry too much though. For those of you who don't know Isabelle that well this is actually kinda of normal for her which is why she takes Miralax every day. But still, since she is already uncomfortable in the halo not pooping doesn't make it any better.

Aside from that she has been in a great mood. I finally let her venture off of her blue mat that I make her sit on in case she falls and she has been a new person ever since. It is extremely stressful for me because I worry about her falling over. But hey, at least she is happy. Her pin sites are starting to look much better too. The one in the back has not had any drainage in the past few days and the one in the front is looking better every day.

We have an appointment with Isabelle's surgeon tomorrow for x-rays and a progression check up. I have been increasingly nervous about this check up through out the day. Please keep us in your prayers tonight and tomorrow. As I have said before there is always the chance that the fusion will not work and her surgeon will have to go back and do it again. And of course the same risks from the last surgery will apply to another surgery as well.

Please pray that we get a GREAT report from her doctor tomorrow and that every thing looks good with regards to her spine. Also, for her pin sites to stay uninfected and she remain healthy through out this journey. Please also continue to keep Stellan in your thoughts and prayer as well. Don't forget, you can click on the icon to the right that says, "Praying for Stellan," to read his story and get updates on him. I will update tomorrow after the appointment as soon as I can.

Prayers for Stellan


An angel in a halo praying for sweet Stellan

Sunday, July 26, 2009

Stellan

I would like to ask all of you to please click the icon to the right that says Praying for Stellan.

Little Stellan has been struggling with severe heart problems on an off since before he was born. Things are not looking to good for him right now and him and his family need all the prayers they can get.

Picture Post











Isabelle is still doing pretty well. She did get sick yesterday while I was at work but I am pretty sure it was caused by her reflux and possibly lack of pooping. Thankfully my mom sacrificed her hand to catch the throw up so she got a minimal amount on her vest. Thanks mom! The two pin sites that have been causing some problems are still draining slightly but they have not gotten worse. I put a small amount of Neosporin on the one in the front and it actually looks a little better. I tried putting it on the back one too but it is difficult to get to with Isabelle's hair in the way.

As far as sleeping goes she took a one hour nap yesterday and slept from 7:30 last night until 6:30 this morning. She woke up once around 4:30 but quickly fell back to sleep after I made some adjustments to the wedge she is sleeping on. So all in all a pretty good night.

Prayers for the day...for Isabelle to eat more, have a bowel movement, and for her pin sites to heal. Those, along with the major issues of the fusion working and her spine continuing to stay straight.

Saturday, July 25, 2009

White Is Okay, Yellow and Green Are Not

Sorry for the lack of updates! My internet was down all day yesterday so I wasn't able to get online. I hope I haven't disappointed my readers too badly =-)

We have had a very busy past two days. Thursday I finally felt Isabelle was well enough and comfortable enough with sitting to let her go outside. She sat in her wagon and I pulled her around the backyard. We also blew bubbles and pulled leaves off the bushes. Eleven to be exact. I'm not sure why but that is how many leaves Isabelle wanted. She had a great time and sat very well in her wagon. The only downsides were that she now constantly asks to go outside and going outside makes her smell so I don't like to do it too often.

Friday was an even busier day. We had to take a trip to the ER because one of Isabelle's pin sites had some discharge. Apparently the neurosurgery department doesn't have clinic on Fridays so they told us to go to the ER instead. We waited. And waited. And waited some more. And finally after about two hours one of the neurosurgery residents came in to look at her and said everything was fine. Which was great...but a waste of my time. He said that white discharge (which is what Isabelle had) was ok as long as it didn't smell and she wasn't having any fever or other symptoms of infection. He said to just call if anything gets worse or if it starts to have yellow or green discharge which apparently is NOT ok. Personally I don't think the white discharge is "ok" but hey I'm not the doctor. Another one of the pin sites also looked very red and irritated but did not have anything coming out of it. He said that one was fine too and that redness didn't always mean infection. So he sent us home and upon waking up this morning that very same pin site that was "ok" is now leaking too. Great! And on a weekend when the ER is jam packed. I think I will just watch it and see what happens before I put myself through that.

Isabelle also did not sleep last night. I'm not sure exactly what the problem was except that she just wanted to watch an Elmo movie. I finally picked her up after about and hour and she immediately perked up. So then I knew she wasn't feeling bad...just wanted to play. I sat down in the glider with her and she fell asleep almost immediately. I laid her back down and she of course immediately started screaming. I stayed strong though and left her there. She eventually fell asleep after an hour or so. So, we are both exhausted and I have to work today. But I will try not to complain to much. I would much rather have her here waking up all night than not here to wake up at all.

Check back tomorrow. I am going to try and post some new pictures.

Wednesday, July 22, 2009

All Done Sleep

After Isabelle laid in bed calling for mommy for an hour last night she finally went to sleep at about midnight. Then was up again at 12:15 saying "all done sleep, all done." This cycle continued all night. Most of you who read this blog probably are not around Isabelle and me enough to really know my parenting beliefs so I will tell you that I am a big believer in if you just let them cry they will go to sleep and if you go get them every time they cry they will keep doing it and never go to sleep. My rule since Isabelle was born was that if she woke up crying I would go check on her once to make sure she was ok and then leave. If she was not sick or had any visible signs of injury I would just leave her in her room and let her fall asleep. I continued this pattern until Isabelle was two months old when she started sleeping through the night and to this day she rarely wakes up at night unless she is sick or hurting.

So, last night I found myself torn on what to do when she kept waking up. My heart was saying, "Aww that poor baby. She has got to be so uncomfortable and those pins in her head have got to hurt." But my head was saying, "She is FOOLING YOU! She has slept through the night for the past five days. Those pins do not hurt and as soon as you pick her up she quits crying and wants to play. Yep, she's got you fooled."

So, from about 12:45am until 6:30am Isabelle slept on and off but I did not get up to get her. How did that work out for me you ask? Wonderfully so far! She took a 2 and 1/2 hour nap this afternoon and has been sleeping soundly for the past two hours. I will let you guys know how the rest of the night goes.

I also wanted to give you guys a few funny snippets from the past couple of days:
When asked, "What do you say?" after Isabelle burped, instead of responding with "excuse me" as she normally does she said, "Crap!" I have no idea where she got that from.

When asked why she was scratching her hiney she responded with, "See poo poo?" Um, no thanks.

While watching Sesame Street Isabelle was asked what Big Bird was doing. She responded with, "Big Bird crapping." I'm pretty sure she meant to say, "Big Bird clapping." I hope...

Finally, after opening a diaper with a rather large poopie in it I said, "Holy Cow!" In which Isabelle responded with, "Holy Cat! Holy Sheep!" If you say so sweetheart.

Tuesday Run Down

Ate a good breakfast
Watched Elmo
Watched Elmo
Kept tilting to the left while watching Elmo
Ate one bite of grilled cheese for lunch
Took a nap
Had a snack
Watched Elmo
Sat up straight while watching Elmo
Watched more Elmo
Decided sitting was boring and started scooting around on butt
Had one bite of pizza for dinner
Had a visitor who brought some really great stuff from her and some other really GREAT people
Went to bed
Mom went to see Harry Potter
Mom came home to me awake and rocking in the chair with Mimi. Oops! Got caught!
Laid in bed and called for mommy for an hour
Gave up, it ain't gonna happen

Tuesday, July 21, 2009

How Good It Is...

...To sleep in your own bed! Isabelle and I both got a great nights sleep last night. I put her down around 7:30 and she was asleep by 7:30:15. She did wake up around midnight saying "No medicine" but went right back to sleep. All of the activity yesterday wore both of us out.

Did you know that if you are in the hospital and they order x-rays or other tests for you someone has to come "transport" you to where you are going. Even if you can walk on your own they have to walk with you down there and back. Well when Isabelle got her x-rays done yesterday we were "transported" down to the x-ray room. And by transport I mean I carried Isabelle all the way down while the transporter walked with us. We got the x-ray done and then I had to WAIT for the transporter to come back and walk us back to her room. Did I mention Isabelle's halo and vest are about five extra pounds of weight? And that there is no comfortable way to hold her because it is so bulky? And that we actually got two x-rays done yesterday so we had to do that twice? Needless to say my arm is dead weight right now. I can barely lift my coffee this morning. But, I'm not bitter about that. Not at all.

Anyway, many people have been asking me why Isabelle got to go home so early when we were told it would be two or three weeks after surgery. I asked the surgeons nurse and she said that Isabelle had done so well with her recovery and started eating earlier and better than most other kids that there wasn't really any reason to keep her there. Plus, her pin sites looked great and she was already able to sit a little bit on her own. So, they ordered the feeding tube to come out and for us to go home. So here we are.

Isabelle has adjusted pretty well to being home. When we got here she did ask to take her "hat" off. I guess she figured her halo is a hospital thing and since we are home there was no need for it to be on. I felt so bad for her but I had to laugh when she called it a hat. We have managed to find ways for her to sit and lay comfortably. We bought a study pillow for her to lean against and we prop some pillows up around it to keep her from tipping over. She doesn't want the pillows around her though to she still tips over some. She is able to lean forward and reach for stuff in front of her and sit back up on her own but she does tire quickly. The main problem I am having right now is that she wants to move around the house like she used to but she just doesn't have the balance and strength right now. I am sure after a week or so and she gets used to the extra weight she will be able to get back to almost normal. I'll just be following her around the house like a paranoid nut case but that's ok. We also bought a wedge for her crib so she is able to sleep at an incline and I can put her far enough up on the wedge to where the pin sites in the back are just above the edge. This way she is not laying directly on them which is both uncomfortable and apparently a big no no according to her surgeon. I also gave her a sponge bath last night WITH soap, finally. She doesn't smell so bad now. I am going out today to look for dry shampoo to wash her hair. If anyone knows where to find any or have any suggestions for a good brand to use let me know.

Isabelle woke up this morning in a great mood and she had a big breakfast. She ate almost a whole bowl of grits and drank almost a whole cup of "pink" milk. Also known as milk with strawberry Carnation. Right now she is propped on her study pillow watching Elmo and bossing her Aunt Sissy (aka Krista) around.

Even though we are home I will continue to update everyone on Isabelle's progress for those who are interested. I have also decided I am going to use the blogs for a book for Isabelle when she is older so I will keep writing regardless of whether people are reading them. I do hope everyone continues to keep track of us during this journey though.

Monday, July 20, 2009

Well There's No Need For You To Stay Here

This is a picture of my house.

This is a picture of Belli and me at my house.


Why are we home? In the words of Isabelle's surgeon this morning, "Well, there's really no need for you to stay here. See you next week." So, please do no come visit us in the hospital. We won't be there =-) We WILL welcome any and all visitors at home though. Let me know if you need directions.

Isabelle did get an x-ray done today and the surgeon said all of the hardware and the graft that he put in look good and in place. He did say that C2 in the posterior which he fused and C2 in the anterior look like they are separating a little bit so he is afraid he will end up having to do the anterior fusion as originally planned sooner rather than later. He did make some adjustments to her halo in hopes that this will help line up those bones a little better and put it off longer. Please continue to keep my Belli in your prayers that she has a quick and perfect recovery and any other fusions will not happen for a long long time.

Now, I am going to go enjoy being at home with my Belli.

Sunday, July 19, 2009

Sunday 7/19

Isabelle had another great day today. I really do not have anything new to update on medically speaking but I just wanted to let everyone know she was doing well. Earlier tonight she figured out that she can use her halo as a table. She kept putting toys and her DVD cases on top of her head. My camera was dead so I wasn't able to get a picture but I will try to get it next time. Hope you guys enjoyed the pictures.

Check back every once in a while tomorrow. I may have a BIG surprise for you guys.

Halo and Vest Pictures








Saturday, July 18, 2009

TIME OUT

Isabelle is definitely back to her old self. She is happy, laughing, playing, eating (kind of), and being sooooo bad. I am loving it. She has gotten so rowdy that she started kicking her lap desk off of the bed and laughing hysterically. It was quite funny but the mother in me knew she needed to stop or she was going to break something.

So, I asked her to stop. She did it again. I told her not to do it again or she wasn't getting it back. She did it again. I told her if she kicked that lap desk of her bed again she was going to time out. She looked at me and said, "No, all done," and didn't do it again. That's my girl!

Isabelle has eaten pretty well today and has been in a great mood. She has not fussed once all day except for when I told her it was nap time but after a few minutes she was passed out. She is absolutely amazing to me. The halo and vest do not seem to be bothering her at all. She even fell asleep today with her feet crossed and her hands holding on to the poles that attach the halo to the vest like she was just really comfortable.

Now that we have settled in and gotten comfortable we will now be accepting visitors =-) Our room number is 681. I kick everyone out from 12-230 to eat and then take a nap so don't come then. I also want every one to know that I read EVERY comment left on my blog so if I don't respond to you do know that I have read it and appreciate it immensely. It is always great to hear words of encouragement or to know someone is praying for us.

I am sorry that I have not posted any pictures but I have not left the hospital since Thursday and for some reason I cannot post pictures while I am here. I am going to work tomorrow and then home to get more clothes so while I am there I will try and post pictures. I know all of you are dieing to see Isabelle and the beautiful neck I told you she had. I will do my best to get them to you all tomorrow.

Saturday Morning Update

Isabelle had a pretty good day yesterday. Once we sat her up some more she was much happier. She played most of the day. I kicked everyone out of the room at 12 for lunch and nap time and she ended up sleeping for about an hour. She did get sick and vomited last night around 7 and then it started coming out of the other end a few times. After that she really seemed to feel good. The only down side was that when she vomited her feeding tube curled up and came out of her so the nurse had to put it in last night around 8:30. Isabelle of course threw a fit but once the nurse got it in she went right to sleep. They came and x-rayed her just to make sure the tube was in the right place which woke her up. The tube was in the right place so they started her feedings but it some how kept getting kinked up so we had to adjust it a few times and get another x-ray. This ordeal lasted until about 1:00am when the nurse just gave up and decided to wait until this morning when she was awake. Thank God or we would not have slept all night.

Isabelle's surgeon did come by yesterday to check on her and he said everything looked good. He has gotten anymore x-rays or anything but as far as the swelling and movement goes she looked good. She was asking me yesterday if she could walk so I asked the doctor and he said he didn't see any reason she couldn't as long as we are holding on to her since it would be very bad if she fell. He is going to have someone from PT and OT come in to see us and maybe give us some tips on stuff we can do at home. Daphne, we expect you at our house for PT as soon as we get home =-)

So far this morning Isabelle has been GREAT. She ate three Ritz crackers, two bites of a French toast stick, four bites of chocolate pudding and she drank 1/4 of a carton of milk. That's pretty good for someone who hasn't eaten on their own for a week and a half. Right now she is watching an Elmo movie and being a happy camper. As for myself, I'm going to take a shower so I won't smell anymore. You're Welcome =-)

Friday, July 17, 2009

The Diaper Runneth Over

Isabelle has been pooping all night and all day. Her tummy is much less swollen and she feels a lot better. But, our room kinda stinks now and we didn't get any sleep last night.

I don't really have any news to update on. The doctor is in surgery most of the day on Fridays so it might be a while until we see him. We have had Isabelle sitting up in the bed and she seems to have really enjoyed that. She still has not eaten or had very much to drink so we might start tube feeding her again or we might wait a couple more days to see if she will eat on her own. I will let you guys know though.

I will update again if the doctor has anything new to say

Thursday, July 16, 2009

Thursday 10:15pm

Quick post before bed.

A doctor from neurosurgery came by to check on Isabelle's puffiness and her swollen belly. He said he cannot think of anything it could be except constipation and gas so I guess that is good. I don't see how it could be constipation since she has had a bowel movement today and pretty much nonstop from Monday to Tuesday. But hey I'm not a doctor. Just her mom who probably knows her better than they do. But whatever, no hard feelings or anything.

Anyways, the nurse and I gave her a suppository and the doc prescribed her Mylicon drops for gas. At least it can't hurt so ok.

Isabelle is now sleeping soundly and I am hopefully about to be doing the same. Please pray that the child in the room next to us quits screaming or no one will be sleeping tonight. And that his oxygen monitor quits going off because it is loud and annoying me. AND, that the nurses outside shut up too.

Wow, maybe I am a little cranky today myself.

You're Outta Here!

That's what the people in the PICU said to us just a few hours ago.

We are now in a room and have gotten unpacked and semi comfortable. I will disclose the room number at a later date once everyone...well Isabelle and I, are settled in =-) Not that I don't love all of you guys dearly but we need some calm time.

Isabelle has had an ok day. She has been very cranky and restless all day since she woke up at 12:30. She is really puffy and her stomach is very hard. We are not sure exactly why but the doctor will be coming by later tonight to check on her. Once he has stopped by the nurse is going to give her some morphine to calm her down and help her sleep. The down side is that the doctor might not be here until 10 so we have another hour or so of fussing. I hope he gets here soon though so she will feel better and get to sleep.

I will let you guys know how the night goes.

Mommy, Mommy, Mommy

I left Isabelle's room this morning at about 930 to let her get some rest. She ended up taking a good three hour nap! I was hoping that once she got some rest she would start feeling better and be less cranky. I was wrong. She's still cranky. From 12:30-2:00 she just said "Mommy, mommy, mommy" over and over again none stop. It was a little annoying. It made my head hurt quite a bit. It was GREAT.

On a brighter note she did finally get to drink some juice and we got to sit her up in her bed almost all the way. The beds will sit up to a ninety degree angle so we are going to slowly start sitting her up until she is comfortable sitting on her own. She will probably have to rest a lot since the halo and vest weigh about five pounds but she will eventually get used to it.

We do have a room but they have not moved Isabelle yet. They still have to write up transfer papers so it will be a few more hours.

Thursday Morning Update

Isabelle had a pretty good night. They took her down this morning for a CT scan and she did great. I spoke with her surgeon around 8:30am about the results. The results weren't great but they weren't awful either. The CT scan can give him a better picture of what is going on than the x-rays can. He said the fusion does seem to have gotten her spine in a better alignment than it was but still not perfect as I said before. From the pictures they took he does feel that he will have to incorporate both C1 and the base of the skull at some point. Of course there is no way for him to know exactly when that will need to be done but hopefully it will be long time from now. Another bit of bad news is that one of the screws is going into the spinal canal. The good news is that she is still moving all of her limbs and it does not seem to be affecting her. So, he does not see any reason to bother with it unless it starts to affect her movement.

Another bit of good news we got today is that they are going to try and get us into our own room. I will let you guys know when that happens so you can come visit at any time. Well I take that back. Once Isabelle is in her own room and more comfortable I am going to try and get her back on a more regular schedule so I will be making visiting hours of my own. But I will let you guys know what they are as soon as I know.

I am still very pleased with the outcome of the surgery and that my girl is still here with me. I thank God for that. I do still pray that she continues to do well and she heals quickly. Please continue to do so as well and pray that we are able to wait years and years and years before having to do another fusion. I will update again later.

Wednesday, July 15, 2009

Wednesday Night Update

Isabelle continues to do well tonight. When she got back up to her PICU room she told the nurse "Elmo on, light off, yellow blankey, get mommy!" So, I think she is doing just fine. Her vital signs look great and she is not having any trouble breathing. She took a nap for about an hour or two between 6-8. I am leaving at nine tonight so Isabelle as well as myself can get some rest. I am going to take some pictures and try to post them tomorrow. Even with the Halo and vest on she is still absolutely adorable. She also no longer has a collar on so you can see her neck and the true shape of her face and she is even more beautiful now than she was before. I may be just a tad partial but hey I'm the mommy. If everything goes well and she is feeling up to it she will be able to sit up some time tomorrow. I will post again tomorrow.

Thank you again for all of the prayers. Please continue to pray for minimal swelling, continued easy breathing and everything else continues to go well. Good night and thank God for such a great outcome so far.

2:30 Update- Surgery Complete

Thank God! I just spoke with Isabelle's surgeon. The surgery is over and everything went great! Her spine did not end up being as straight as it was when Nadine saw her because when they put the graft in it popped back a little but he said he was pleased with how it looked. Her nerves still seem to be working fine so she should be able to move around just as much as she could before. He did end up fusing only C2-C6. Isabelle is still on the ventilator right now and it will be up to the anethesia team to decide when to take her off. He said that since everything went well and her spinal cord did not seem to be damaged it would probably be later this afternoon but they may wait until tomorrow morning just to be on the safe side. Once the tube is out and she is breathing on her own we can all breathe a little easier. They are going to wake her up a little now just to make sure she is still moving everything and they will bring her back to the PICU shortly.

Thank you all so much for your prayers and support through out this past week. It is amazing to see how many people care so much about my Belli. The immediate danger is now over but we do still have a very long road ahead of us. Please continue to keep us in your prayers. Thanks again!

2:00pm Update

We just got a visit from Isabelle's old neurosurgeon's nurse, Nadine. She just went down to the operating room to check on Isabelle for me. She said she is still doing great and from what she could tell he did only fuse C2-C6 and her spine is as straight as a board. Most of the plates and screws are in place and they were about to put the graft on. All of Isabelle's nerves are working correctly still so it seems there has been no damage to her spinal cord so far. Right now the worst of the surgery is over but there are many other issues that may arise over the next day or so. I am extremely happy with things so far though. They probably have a couple more hours left. I will update again when I know something new. Thank you for your continued prayers.

115pm

I just got a call from Isabelle's nurse. She is doing great and they are continuing on with the surgery. No other info than that. I should get a call in another hour or so. Keep the prayers up.

1130am

I just spoke with a nurse who is in the Operating Room with Isabelle. They were successful in getting her intubated. Praise God! She is currently on the ventilator and that will be doing the breathing for her for at least the rest of the day and night until the swelling goes down. This is great news but we are not out of the woods yet. The actual surgery has not started. Right now all of the different medical teams are getting everything ready and getting all the probes on that she needs. They should be calling again in the next hour or so with another update. Continue the prayers. They are working!

945am

I just left Belli. Please continue to pray for her and the medical team working on her. I will update when I get info.

745am

We are at the hospital. I went back and spoke with Isabelle's nurse and who I am assuming was one of the PICU doctors. She slept all night from the time I left at 10 until about 7 this morning. I am so glad she got a good nights sleep. The surgery is scheduled for 9am and they will call me before they take her down so I can see her. They will not let me stay with her until then because "visiting hours don't start until 830." I have a few select words for them at the moment but I will choose not to say them and try to be nice. I will update as often as I can through out the day so please keep checking back.

Please pray for my Belli today.

Tuesday, July 14, 2009

Tuesday Afternoon Update

Isabelle continues to have a so so day. She has been pretty cranky with small moments of funny. She has not needed Benadryl or Morphine so far today which is a plus.

I just spoke with someone from anesthesiology who explained exactly what they would be doing on their end tomorrow. They will be putting her to sleep through her IV like normal. They will then insert a breathing tube and hook her up to the ventilator. They will also insert an IV into an artery in her arm to monitor her blood pressure. Once the surgery is over they will bring her back to the PICU with the breathing tube still in. They will leave it in place until her surgeon is confident that there will be no more swelling in the neck. They do not want to pull the tube out directly after surgery in case the neck or throat swell and cause her to be unable to breathe.

As with any surgery there are many risks with anesthesia and potential breathing problems but this particular surgery makes things a little more difficult. Because she is in the Halo and has the spinal instability they cannot tilt her head back to intubate her so it may be a little more difficult. They may also need to give her blood if she starts to lose to much. The vest that Isabelle will have on also makes it more difficult to perform CPR if needed. So, there are many many many problems that could arise.

Please continue to pray for everything to go well with both the surgery and anesthesia and that no problems come up. Pray for strength and knowledge for all involved and a restful night for all of us.

GREAT News This Morning

*I forgot to mention that a few people have told me they have not been able to leave a comment on the blog. I have changed my comment settings to now everyone should be able to. Original post follows.*

*Original Post*
Isabelle was asleep when I got here this morning at 8:30. She had an ok night. They did have to give her some more morphine around 4:30 but otherwise did pretty well.

I spoke with Isabelle's surgeon about an hour ago. He did not mention if this new positioning is working better but I am assuming it is at least not making things worse because he did not change anything. So, the great news that all of you are wanting to hear...

1. The surgeon has decided to only fuse C3-C9. He will be taking a small piece of her rib out to use in the fusion along with screws and plates normally used for jaw bones in adults.
2. Because C1-C2 provide the majority of the movement in the head and neck, Isabelle will still be able to look side to side and nod her head to a degree. She of course will not be able to move her neck as completely as you and I can but she will have some range of motion. Most importantly when she gets older and I call her name she will not be able to use, "I can't move my neck," as an excuse not to look at me ;-) I know you can ALL see her doing that.
3. The surgeon has also decided to only fuse the posterior side and NOT anterior which means ONE day ONE surgery THE END. Praise GOD!

Now this is the PLAN. Plans can and do change. I of course pray that they won't (at least not for the worse) but I am one of those "I'll believe it when I see it" types of people so for now I will just be cautiously optimistic. From the beginning I have just prayed that I will leave this hospital with Isabelle alive and functioning but I will certainly take more than that if I can get it.

Everyone should keep in mind that the surgery is still no less dangerous and we still have after surgery issues to worry about like infections in the pin sites. Also, with any spinal fusion for any person there is always the chance the fusion will not work and the surgeon will have to try again (this is why Isabelle will have to stay at the hospital for at least three weeks post surgery). They will x-ray her neck periodically to make sure everything is doing what it is supposed to.

Also, although the surgeon will not be fusing the anterior side now it is likely it will need to be done later in life. There is no way to know when as it depends a lot on growth which is different in every child. The longer the better though.

Lastly, for those who want to see Isabelle today before surgery. The visiting hours are 830am-2pm and 4pm-6pm. I will be spending the 8pm-10pm hours with her alone. So if you want to see her get here before 6...please =-).

I will post again later on tonight and hopefully be able to put up some pictures and a really cute video I took of Isabelle last night while she was on the Morphine.

Monday, July 13, 2009

Monday Update

Just a few quick things to update on. Sorry it took me so long but this is the first time I have both had access to a computer and was not busy working. My mom was with Isabelle today while I was at work so I have not actually spoken with the doctor so I am just going from what my mom has told me. So here goes...

Report from the doctor- Isabelle's curve did not improve any over the weekend. He came in this morning and moved Isabelle to the top of the bed with Isabelle's head hanging off. The traction weights where holding her head up but she was basically hanging off. This ended up not working because she kept sliding backwards and hitting her head on the metal post holding the traction up. They ended up putting her on a wedge with some pillows and blankets around her to keep her still. Her head is now hanging off of the wedge instead (I will post a picture tonight or tomorrow). While I am not a doctor and I am sure Isabelle's doctor knows what he is doing I am not really seeing how this is working. She continues to slide back on the wedge so they are having to move her back down every 20 minutes or so. Hopefully once she falls asleep she won't slide up as much. Surgery is still set for Wednesday morning around 7 or 730. I will have more details on that tomorrow.

Other medical updates- Isabelle still has not thrown up since starting the Zantac. She has also pooped about 80 millions times today so she is feeling much better. From what my mom and sister told me she was in a pretty good mood most of the day except when they were moving around a lot. She has only had Morphine twice today and had she still been just lying in the bed instead of on this wedge thing she may not have needed it. She did not have any total meltdowns but small ones. What she is laying on seems to be kind of unstable so it is even more important now that she doesn't move than it has been this whole week.

There really aren't anymore updates other than those. With only one more day left until the surgery my nerves are really starting to hit. Please continue to pray for strength for both Isabelle and me. Wednesday morning will likely be the hardest time in my life knowing that when she goes behind those doors I may never see my sweet girl on this earth again. Pray for her safety and the hands of her surgeon and others who will be involved in the surgery. I will let you guys know the plan once I speak to the doctor tomorrow.

Sunday, July 12, 2009

Zzzzzzzz

Shortly after they gave Isabelle the Morphine at 10:30 it was time for her Motrin. We also decided to give her some Benadryl in case she was itching from the Morphine. The combination of those drugs knocked her out until 2:45 this afternoon. We know for sure now that she is itching because she had a big red mark on the back of her leg where she had been scratching. She has also been rubbing her face and nose a lot too. She was awake until about 6 when they gave her some more Benadryl. She was still asleep when we came back at 8. I went ahead and left so she could sleep and so I could get home and get some sleep myself. My wonderful coworker Amy has again been nice enough to let me work for her tomorrow so I could be with Isabelle Saturday after the surgery.

Over the weekend we had a couple of visitors. Thanks to Candi and Kelly (friends from The Bell Center) for coming by to see us. Hopefully once Isabelle is in her own room you guys can bring your sweet little ones. I know Isabelle would enjoy it! Thanks also to Aunt Karen and the Beane family (sorry I missed you guys), Lori Tittle, Aunt Betty, and Aunt Josephine.

Since I will be at work tomorrow I will not be there when Isabelle's surgeon comes for his morning rounds. However, my mom has explicit instructions to call me as soon as he leaves to tell me what he says as far as adding more weights, the surgery dates, etc. I will post as soon as I can but being at work I might not be able. If not I will try to get my sister to do. Either way we will have some more information tomorrow at some point.

Sunday Morning Update

*Updated Post*
I forgot to mention that the on call neurosurgeon came by and said that this mornings x-ray looks pretty much the same as yesterday. She has still had a significant improvement since Wednesday but the past couple of days have not changed much. He said Isabelle's doctor might put more weights on tomorrow to see if this will help her spine straighten more. Pray that is does!


*Original Post*
Isabelle finally fell asleep last night around 5:30pm and as of 9:45pm when we left she was still asleep. From what the nurse told me she slept all the way until 11:30pm. When he came in to check on her and flush her IV he realized that the IV was actually leaking a little bit so he had to take it out and move it to her arm instead of on her hand. Apparently she had a little freak out when he did this so they gave her some more morphine. Other than that she is doing pretty well. She was in a great mood from the time we got there at 8:30 until about 10:30 when she had another come apart. We don't know the exact reason she continues to have these meltdowns. She is on Motrin and Tylenol for pain and from what I have been told the pin sites probably are not hurting her that badly. It is likely a mixture of being uncomfortable and the fact that she has not had a bowel movement in a couple of days. Hopefully soon though!

I will be leaving today at 12:30 to go to work and will not be back until 5:30 or so so I will update again sometime after that.

Saturday, July 11, 2009

Pictures (Seriously)





Evening Update

Still not a whole lot to update on. Isabelle hasn't had the best day. Medically speaking she is doing fine. She has not vomited since last night at 8:30 but they have had to give her morphine a couple more times to keep her calm. She has been really cranky and some times just down right mean. But who can blame her really. I have still been unable to upload pictures but I know it will work at home so I will try to do it tonight. Sorry about the lack of info but I guess no news is good news.

Morning Update

Not to much to report on this morning. Isabelle has had a so so morning. No more throw up since last night but they did have to give her more morphine around 3am. Hopefully the Zantac has done the trick. I have been trying to post pictures for you guys but for some reason I have been unsuccessful so far. I will continue trying though.

Friday, July 10, 2009

Trow Up

My poor girl just can't decide if she wants to be happy, playing, and giggling....or throwing up. When we went in for the 4-6 visiting hours she was the happiest and most normal I have seen her yet. One of Isabelle's other PT's, Daphne, came by to visit. When we walked in Isabelle yelled "Hi Mommy! Hiya Naphne!" It was adorable. Daphne also brought her some really great stuff to play with. Isabelle especially loves the pinwheel. Thanks Daphne! We read books and colored on the magnadoodle. Threw some more play-doh...you know, normal stuff. When I left at 6 she was just falling asleep.

When we went back again at 8 she was doing pretty well for about 30 minutes. She was very calm and watching her Elmo movie. Then she started whining a little bit so I walked over to her to see if she was ok and she looked at me and said in the softest, sweetest voice, "Trow up." And throw up she did. Twice actually. So, the have stopped her feeds for now and the PICU doctor has prescribed her some Zantac hoping the this will keep her from vomiting. Duh?!?! Why didn't I think of that? I mean she was on Zantac for reflux until she was 16 months old. Hmm, guess I forgot. Sorry Belli! So hopefully this will work and the poor baby will be able to stop getting sick.

I did take some pictures and some videos today of Isabelle's more happy moments that I will likely post tomorrow. But for now it is time for bed.

Afternoon Update

Isabelle has had a rough couple of hours. She had a hard time falling back to sleep after she vomited but after about 45 minutes she was finally able to rest peacefully. She slept for another 45 minutes but woke up again even more upset than the first time. She was kicking and throwing her arms around. She got so wild that she almost turned on her side in the Halo. The nurse paged Neurosurgery and they decided they were going to have to give her morphine so she would stay calm. She is supposed to stay straight in her bed in order for the traction to work but that is difficult when she is moving around like that. When I left at 2 she was calm and quite watching her Elmo movie.

In case you guys were wondering the young lady I asked you to pray for yesterday is currently on life support. Please continue to pray for her and her family as well. More updates later.

Pink Playdoh Please

*Update*
Since a few minutes after I added this post Isabelle woke up extremely upset and got herself so worked up she vomited again. She is now in and out of sleep and we are waiting for someone from Neurosurgery to come up and let us know what they want us to do about changing the sheets.

*Original Post*
Isabelle has had the best morning yet. When I first got here she was a little upset because she wants me to pick her up so badly but after a few minutes she calmed down and we had a great time playing and reading books for almost two hours. Remember the great and wonderful PT Holley I mentioned in a previous post? Well she is super great and wonderful today because Isabelle LOVED the play-doh she brought for her to play with. We spent about 45 minutes just throwing play-doh. She did a great job naming all the colors and counting how many play-doh balls she was holding at one time. She was giggling like a silly little girl. She also told my dad "Back up Bubba" when he walked in the room. For some reason my dad taught her to say that whenever some one or some thing was in her way. So now whenever she sees him she says, "Back up Bubba." So, she is doing great so far today and right now she is sleeping.

As for medical updates I was able to speak with her surgeon today and he said that the x-ray they took this morning looks even better than the one yesterday. So, the traction is still working. He said that he was going to go ahead and start getting things set up for surgery on Wednesday so that likely will be the day. He also mentioned that he was still deciding which side he was going to fuse first but that it will likely be the back (posterior). I did ask him if it was necessary to do both the front and back since Isabelle's original surgeon thought he would only do the posterior. He said that if he is able to get her neck in perfect or almost perfect alignment then he might be able to fuse just the back and over time the growth on the anterior side may correct it even more. He said this was possible but not likely. While I pray that I am just able to take my girl home alive and well this scenario would of course be ideal.

More updates later. Possibly some pictures too if I can find the cord to upload them on to my computer.

Thursday, July 9, 2009

15 Minutes My Foot

Someone from the PICU finally came out at 9:45 to let us know they were opening back up. You could hear the excited murmurs of all the families who had been waiting hours to see their babies. Then a collective groan when the woman finished her sentence with "for fifteen minutes."

Fifteen minutes? What? You're flipping kidding me right?!?!?! No, they weren't kidding. I got to go in and see Isabelle just long enough to read her night night book and tell her goodnight. She was pretty upset while I was in there. She wants me to pick her up so badly that sometimes I think she is more upset while I am in there.

As for medical updates her surgeon did come by this afternoon and put a new collar on since she threw up on her old one. Hmm....yea that's about it.

On a side note that has nothing to do with Isabelle particularly I did want to ask that while you guys are praying for Isabelle if you could please say an extra prayer for the young lady in the PICU that they were performing the surgery on earlier. It is unusual for them to perform surgeries in the PICU so for them to have not had time to even get her to the operating room something very serious must have been going on. There were also large amounts of people who I am sure were her family and friends that all got there very quickly which leads me to believe they felt she wasn't going to make it. I of course have no idea what was going on or her medical status but as of 10pm when I left the PICU she was in her room sleeping.

More updates on Isabelle tomorrow. Good night.

Missed Visiting Hours

The PICU has been closed since 2pm so I have not seen Isabelle since then. They will some times keep the PICU closed if they are performing procedures on a patient or if they bring some one in who is in pretty bad shape. Based on the activity in the waiting room over the past few hours I am pretty sure they brought some one in who is in pretty serious condition. There have been a lot of people in and out who I am pretty sure are all family members and from what I overheard some one is not doing very well. While I am sad and slightly irritated I was unable to see Isabelle I do feel very blessed that she is doing relatively well right now.

Isabelle's great and wonderful PT from The Bell Center came by earlier to visit while the PICU was closed but she was able to go in there and peek in on her. She said she was laying in there with her blanky on her face and kicking her legs around. She is probably watching her Elephant Movie.

**I was just told by another mom in the waiting room that they are preforming a surgery in the PICU right now and they are not sure whether they will be opening for the 8-10 visiting hours either =-( **

I will update again if we are able to go in and see her later. If not then some time tomorrow.

Elephant Movie

We arrived at the hospital this morning to a very pleasant surprise. Sweet Isabelle was not only awake but she was not crying and even laughing a little bit. A huge weight was lifted off my heart. The nurse told us that earlier in the morning before we got there Isabelle was begging for her Elephant Movie. Of course the nurse had no idea what she was talking about. Who on earth would know that the Elephant Movie is actually Baby Einstein's Baby Noah which has a picture of an elephant on the front. The poor nurse looked through every movie in her room and offered it to Isabelle but all she wanted was her Elephant Movie. We played ball for a little while and then played with her Elmo balloon. She got a big kick out of letting go of the balloon and letting it hit the ceiling.

So far the only bad part of the day was when we had to change Isabelle's sheet because her diaper got so full it started leaking on the bed. It also got the blanket they had laying underneath her wet. The problems started when we tried to pull the blanket out we realized that part of it was caught on one of the pin sites underneath her head. We ended up having to get a couple of other nurses to come in and help lift her head up so we could get it out. This ticked her off so bad that she threw up...again. The plus side is that at least this time she was tilted to where it rolled down the side of her face and into her collar instead of up her head. Now we are just waiting on someone from Neurosurgery to bring Isabelle a new collar and she will be good to go.

I did get a chance to speak with Isabelle's surgeon this morning and he let me know that the x-rays they have taken of Isabelle since being put in traction look good. The curve in her neck has straightened out a little and hopefully by next Wednesday it will be almost completely straight making it much easier for him to do the fusion.

Wednesday, July 8, 2009

Proof of a Good Nights Sleep

8:30 pm, Last Update for the Night

Earlier in the day Isabelle was placed in an isolation room in the PICU instead of behind the curtain where she was. YAY!!! Not only can she sleep a little better with out all the noise but I can bring my stuff into this room so I will now be able to blog from here if I want to instead of waiting for visiting hours to end. Plus we have a little bit more privacy. Isabelle has been sleeping somewhat soundly for the past hour. She has only cried out a few times and goes right back to sleep. I have found that as hard as it is if I just ignore her when she cries out she will fall back asleep rather quickly.

We did get the results of the x-ray for the feeding tube and they were able to get it into her intestines. They have ordered her feedings and should start that shortly. Maybe once she isnt so hungry she will feel a little better.

I will be leaving tonight at 10 to go home and hopefully get some sleep. Thank you all so much for your support and prayers. We have a long road ahead of us and the worst is yet to come so keep them coming. More updates tomorrow.

6:30 Update

Not a whole lot knew to update on. They did end up putting the feeding tube in but they are still not sure if they got it where they wanted it. They goal was to get the tube past her stomach into her intestines which would alleviate they issue of throwing up. If they feed directly into her intestines it can't come back up. If they didn't get it in her intestines they will still be able to feed her directly into her stomach but we would still have to worry about throw up. They took an x-ray to check but we have not heard back on those yet.

Isabelle is feeling a little bit better. At least she is acting like it. She is still very fidgety and cries out a lot but she is starting to talk a little bit more and asked to watch her Elmo movie.

We did have a few visitors today other than our immediate family and we really appreciate it! Thank you for all of the support.

2:30 pm Update

My poor girl has had such a hard time these past few hours. Aside from the obvious discomfort we have not been able to give her any thing to eat or drink for two reasons. First, she has been so hysterical the whole time that she won't quit moving long enough. Second, because she is laying flat both the nurses and I are extremely concerned that she will choke or aspirate whatever we give her. But aside from those things the worse part was that because she is so upset she made herself throw up. Normally this would not be that big of a deal but since she was laying flat it went up her nose and down the top and back of her head right onto her pin sites. This is NOT GOOD. The pins sites have a high risk of infection to begin with which can lead to meningitis. So, having throw up in them is the last thing we need. We are still in the process of trying to figure out how we are going to feed her but it looks like a feeding tube is the most likely choice. The next visiting hours from 4-6. I will updated again shortly after that.

Halo is On

I just spoke with Isabelle's surgeon and he said the Halo is on and everything went well. She had no breathing problems and everything went as well as could be expected. She was still in the operating room when I spoke with him and he was going back to place a weight on her and then she was going to the recovery. I have not seen her yet and I have no other information. I will update again soon.

Sunday, July 5, 2009

Savoring the Moments

Because I will be extremely busy the next two days I wanted to give you guys one last post before Isabelle is admitted to the hospital on Wednesday.

Since I found out Isabelle was to have the spinal fusion I have spent every moment with her that I could doing any thing and every thing fun that I could think of. We went to the pond to feed the ducks bread. Although Isabelle doesn't actually feed the ducks she just eats the bread herself. But either way she likes it. We have gone to the beach, we have gone to the pool, we got our pictures taken today and then tonight we (well I) played with fireworks. She loved them!

Tomorrow I will be working 9-530 since my one of my coworkers was so sweet enough to switch with me so I could be at the hospital with Belli on Saturday (thanks Amy!). We have a BIG day planned for Tuesday though. We will be at the zoo from 9-11 then straight to Children's for preadmitting paperwork. After that we will probably come home for lunch then off again for more swimming and swinging at our neighborhood pool and park. I may not even make her take a nap. Wait...did I just say that? The routine Nazi? Noooooo, surely not. I guess it won't hurt just this once. So, because we have such a busy schedule this likely well be my last post until after the Halo attachment Wednesday. I will update you guys as soon as I can.

On a more serious note, as most of you are aware this surgery is going to be very dangerous. While the chances are small it is possible that Isabelle may not make it through this surgery. Any time you are dealing with someones spinal cord there is always that risk. While I do know that God has a plan and He knows exactly what he is doing that does not make it any easier to hand your baby off to a nurse not knowing if you will ever hold her again.

I ask that you guys please keep Isabelle, the doctors and nurses who will be caring for her and me in your prayers over the next few days and particularly on July 8th which will be the Halo attachment and the day of surgery which should be July 15th.

I will be back with updates on Wednesday.

Friday, July 3, 2009

As Promised...Beach Trip Photos



Maybe if I don't look at the camera she won't realize I have stickers all over my face

Wednesday, July 1, 2009

Quick Post

Just wanted to let everyone know that our beach trip went great! Isabelle loved "ocean swimming" as opposed to pool swimming I guess. She also chased the "ducks" also known as seagulls. I did not bring the hookups for either of my cameras so check back later this week for pictures and videos!